Pallimed: Case Conferences

What Do I Say to My Kids?

ctsinclair@gmail.com (Christian Sinclair, MD) — Thu, 07 May 2009 16:18:00 +0000

By Ellen M. Redinbaugh, PhD
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 9, No. 1 - March 2009

(Original PDF)

CASE:
Mr. J was a 39 year-old white married male who came to the hospital for a tissue biopsy and was subsequently diagnosed with advanced adenocarcinoma of unknown primary origin. His disease had progressed to the point where the tumors could not be debulked. The previous week Mr. J had been working full time and leading a very active lifestyle, so his diagnosis and prognosis came as a shock to him and his family. The primary medical team consulted the Palliative Care Team (PCT) to assist with symptom management, discussion of treatment options and goals, and planning of end-of-life (EOL) care.

Once Mr. J became physically comfortable and accepting of his poor prognosis, he voiced concerns about how to talk to his 6 year-old son and 8 year-old daughter about his illness and likely death. The RN for the PCT provided Mr. J with books that aid parents in discussing death and dying with children, and the behavioral medicine specialist with the PCT assisted Mr. J in applying these materials to the conversation he would have with his children.

First, as a means of understanding each child’s developmental level, the behavioral medicine specialist asked Mr. J to simply talk about his two children – how they spent their time, what subjects were they good at in school, and what, if any, exposure they had to the death of a loved one or pet. This discussion naturally led into Mr. J identifying words and concepts about illness and death that his children would understand. Mr. J decided he would say the following to his children, “Sometimes people get sick and the doctors can cure them. Sometimes people get sick and the doctors can’t cure them. The doctors don’t think they can cure me, but I am hoping for a miracle because I don’t ever want to leave you.”

Although his message was brief, Mr. J feared he would emotionally break down when having this conversation with his children. He wanted to be “strong” for them so that they would not be too frightened. To promote his sense of self-control Mr. J practiced his conversation with the behavioral medicine specialist who in turn coached him on breathing techniques that would help him stay in control of his emotions.

The practice helped, but Mr. J still feared that “we’ll all end up crying and that’s not going to any of us any good in the long run.” So then the behavioral medicine specialist worked with him on identifying specific ways in which he was a father to his children, e.g., he helped his children with their homework and he read to them every night before they went to bed. She suggested that after he gives them the bad news and answers their questions, Mr. J might reassure his children that he’s still going to help them with their homework and read to them every night.

DISCUSSION:
Young children who are informed of their parents’ terminal illness are less anxious than those who are not told , but many terminally ill parents are daunted by this emotionally stressful task. Deciding how to break the news to children is made more difficult when taking into account the developmental level of each child. Palliative Care Teams often have several books available that guide parents through the process of discussing death and dying with their children. Parents’ abilities to apply the information in these books can be further enhanced with a session provided by the behavioral medicine consultant. The individual session allows parents to tailor their approach to their own families and to practice having and controlling very powerful feelings.

References
1. Rosenheim, E., Reicher, R. (1985). Informing children about a parent’s terminal illness. J Child Psychol Psychiatry Allied Disc. 26:995-998.

2. Siegel, K., Raveis, V., Karus, D. (1996). Pattern of communication with children when a parent has cancer. In L. Baider & L. Cooper (Eds) Cancer and the family, pp 109-128. John Wiley and Sons: New York.

Pain vs. Suffering

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 21 Apr 2009 04:16:00 +0000

By Rev. Dale Anderson, B.A., M Div.
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 9, No. 1 - March 2009

(Original PDF)

Case: During a weekly Palliative Care Consult meeting, it was discussed that if D, 53-year-old woman with congestive heart failure, did not receive a heart transplant within several weeks to a few months at the most, she would probably die. I felt led to visit her, even though she was not on my normal unit rounds. On the initial visit, D was welcoming when I stopped by her room. After introducing myself as a Protestant staff chaplain, I inquired about her pain. D told me how uncomfortable she was and how she felt so limited by her physical condition. When I asked how she was coping with any other areas of suffering in her life, her lips quivered and her eyes filled with tears as she told of the burdens in her soul…deep, personal stresses in her life that continued to that very day. She had tearfully vented for about an hour, as I reflectively listened and reassured her that every word was confidential and I was there for her to listen, if nothing else.

After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of D’s death triggered the process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. D was sent home with a VAD long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours D was back in for her heart transplant.

Surgery went very well, and D was out of the ICU with few complications. Yet, once D was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.

Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.

This was a process that was not resolved as in our modern media. It was assisted in by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, D’s family members who realized D’s mortality and took ownership of her suffering and their contribution to the dysfunction in their household.

In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as :) demonstrating No Pain to 10 being Unbearable/Excruciating Pain. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, what ever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”

While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.

References:

1. Mayo Clinic on Chronic Pain; Mayo Foundation for Medical Education and Research. Kensington Publishing Corp., NY, NY. 1999

2. Egne, TR. Annals of Family Medicine; Suffering, Meaning and Healing: Challenges of Contemporary Medicine. LICSW. Volume 7 No 2. March/April 2009

Methylnaltrexone for Opioid Induced Constipation

ctsinclair@gmail.com (Christian Sinclair, MD) — Thu, 12 Mar 2009 22:14:00 +0000

Methylnaltrexone Image via Wikipedia

By Tamara Sacks, MD
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 9, No. 2 - February 2009

Case

CH is a 56-year-old woman with metastatic breast cancer to bone, liver and brain. She is admitted to the hospital with increasing lethargy and a marked decrease in her oral intake. She has also not had a bowel movement for 10 days. Further interview reveals that she has been on a fentanyl patch 75 mcg for months, senna and colace, and hydrochlorothiazide. Her diuretic is stopped and she is placed on intravenous fluids. Except for dehydration, a metabolic work up is unremarkable. Her exam reveals hypoactive bowel sounds, a scaphoid abdomen with palpable mobile masses, and soft stool in the rectal vault. She is disimpacted. No active bowel movement follows despite suppositories. She is also not able to retain enemas. She has increasing nausea and anorexia. Given her inadequate response to a bowel regimen from below and inability to tolerate an oral regimen, she is dosed with methylnaltrexone subcutaneously x1. She has a large formed bowel movement 2 hours later.

Discussion

Constipation is a well recognized side effect from opioids. Tolerance does not occur. In fact, the dose that can cause constipation is ¼ of an analgesic dose. Opioids exert their constipating effects by decreasing GI motility, gastric emptying, increasing ileocecal valve tone, increasing fluid resorbtion, and decreasing the reflex to defecate.

Methylnaltrexone (MNTX) is a mu receptor antagonist that unlike naloxone does not cross the blood brain barrier as it is a quaternary amine. Naloxone has been used in the past for opioid induced constipation. However, this use has also been associated with opioid withdrawal and decreased pain relief. MNTX was approved for the treatment of opioid induced constipation by the FDA last year. Given its expense, many institutions have tried to limit its use. Our institution has made a Palliative Care consult one of three consultation services that can approve dosing.

The phase three clinical trials that led to approval of MNTX involved patients either enrolled in hospice or as part of a palliative care program, and opioids were thought to be the primary cause of the constipation. They must have been receiving opioids for two weeks and on a stable opioid and laxative regimen for three days.

Enrolled patients had had no bowel movement in greater than 48 hours or had had less than 3 bowel movements the week prior. Bowel obstruction, fecal impaction or other acute abdominal processes were ruled out. In addition, patients with peritoneal dialysis catheters and fecal ostomy bags were excluded. While 80 percent of the patient population had cancer, patients with cardiovascular disease, AIDS, dementia, and COPD were also included. MNTX is administered subcutaneously based on the patient’s weight. After administration of MNTX, greater than or equal to 50% of the study group had a bowel movement within 4 hours. Most patients had a bowel movement within 30-70 minutes. As compared to placebo, the most frequent side effects were abdominal cramping, nausea, dizziness, increased body temperature and flatulence. However, the number of patients who discontinued therapy secondary to side effects was similar to that in the placebo group. No decrease in pain control or signs of opioid withdrawal were noted as compared to the placebo group.

There are many medications and dosage forms that are available for opioid induced constipation. Previously, routes of administration have been oral and rectal. Dysphagia, nausea or decreased mental status can greatly hinder an adequate regimen by mouth. Rectal routes of suppositories and enemas can also be tried. Inability of the patient to participate can limit effectiveness of enemas. In properly selected patients, MNTX may be able to aid in relief of opioid constipation without adversely affecting pain control

References:

1. Thomas, Jay et. al. Methylnaltrexone for Opioid Induced Constipation in Advanced Illness. 2008. NEJM 358 (22): 2332-2343.

2. Yuan, Chun-Su. Methylnaltrexone Mechanisms of Action and Effects on Opioid Bowel Dysfuction and Other Opioid Adverse Side Effects. The Annals of Pharmacotherapy, 2007. 41: 984- 993

Pallimed 2009 Annual Survey

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 10 Mar 2009 02:49:00 +0000

SURVEY CLOSED WED MARCH 18, 2009

Results posted on Pallimed Main blog in April

(re-posted from the main Pallimed blog)

Dear Pallimed Readers,

Thanks so much for joining us here at Pallimed. Last January we had our first annual survey to get some more structured feedback from the readers. (Here are the results from the 2008 Pallimed Readers Survey.) This year we ask you for a few minutes to complete this year's survey. (Last year the survey took less then 6 minutes on average.)

It is even shorter then last year's, since we took out some questions! Blame it on the economy, we cannot even afford more questions this year. Drew, Amber, Amy, Tom and I appreciate your feedback very much.

The survey is open for just one week. Please complete it only once. It is the same survey regardless of which blog (Main, Arts, Cases) you access it from.

We will not sell your information. We pledge not to bombard you with survey pop-ups, or separate emails asking you to finish this. It is a voluntary survey.

We are expecting to provide our readers with some feedback from the survey by the end of March.

Thanks,

Christian Sinclair (on behalf of Drew, Amber, Amy, Tom and Pallimed)

Metoclopramide-Induced Gynecomastia

ctsinclair@gmail.com (Christian Sinclair, MD) — Thu, 26 Feb 2009 21:38:00 +0000

By Gordon J. Wood, MD
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 9, No. 1 - January 2009

(Original PDF)

Case

Mr BT is a 57 year old man with stage IV laryngeal squamous cell carcinoma, status post radiation and chemotherapy who is now thought to have no evidence of metastases or recurrence. He was followed in a palliative care clinic for chronic musculoskeletal pain and was referred to a new palliative care physician when his prior physician left the practice. Upon presentation to the new physician, the patient complained mainly of painful gynecomastia (excessive growth of breasts in a male) without galactorrhea (spontaneous flow of milk from the nipple) for the past several months. Besides some unrelated knee pain, his examination was remarkable only for bilateral tender gynecomastia. He had not undergone any endocrinological lab studies and a recent PET/CT of the head/neck/chest/abdomen/pelvis was unremarkable. Upon review of his medications, the only possible culprit was metoclopramide which had been started approximately one year prior for nausea. The nausea had since resolved but he was still taking the medication since it was prescribed on a scheduled basis. The metoclopramide was discontinued and several labs were ordered in consultation with endocrinology including testosterone, prolactin, TSH, free T4, FSH, LH, estradiol and HCG. Lab workup was largely unrevealing although most, including the prolactin level, were drawn after the metoclopramide was discontinued. Over the several months following metoclopramide discontinuation the patient’s gynecomastia resolved without any recurrence of his nausea.

Discussion

(Not the patient in this case) Gynecomastia Image via Wikipedia

This case, although relatively simple, is important for two major reasons. First, it reminds us of a rare but significant side effect of a medicine commonly used in Palliative Care. Second, and perhaps more importantly, it highlights the dangers of polypharmacy in the Palliative Care setting.

Metoclopramide is a Dopamine type 2 (D2) receptor antagonist and is used as an antiemetic and prokinetic agent. In addition to these effects, it also reliably increases prolactin levels through its action on the D2 receptor. Dopamine normally inhibits pituitary secretion of prolactin. Metoclopramide administration blocks this inhibition resulting in increased prolactin levels.1 This effect has been used as both a research tool and as a clinical test. Symptomatic gynecomastia from elevated prolactin in patients taking metoclopramide, however, is rare, although it has been reported.² Galactorrhea has also been reported. In fact, metoclopramide has been used to augment lactation in breast-feeding women.³ Upon serologic testing, prolactin levels will generally be elevated in metoclopramideinduced gynecomastia. Discontinuation of the drug generally results in resolution of the symptoms.

Since metoclopramide is generally considered a first line antiemetic and is frequently used in clinical Palliative Care practice, this case serves as useful reminder of this rare but significant side effect. The equally or more important message from this case, however, is the need for careful medication management in this vulnerable population.⁴ Going back to Cicely Saunders, one of the guiding principles of Palliative Care is the scheduled administration of medications to provide continuous symptom control. Recent literature reinforces this concept in the management of nausea and vomiting.⁵ In addition, it is suggested to not only use scheduled antiemetics but to add second and third antiemetics as needed instead of stopping one and starting another. While this method has been shown to provide effective relief of symptoms, it can expose the patient to a high risk of side effects if the practitioner fails to taper the medications after the emetic impulse has resolved. This patient had no recurrence of his nausea with discontinuation of his metoclopramide, suggesting that he could have been spared the development of gynecomastia if the metoclopramide had been tapered earlier.

This case also reinforces one of the most basic but important principles in medicine: symptoms which emerge after initiation of a medication are most likely caused by that medication. Because of the serious and progressive nature of the illnesses encountered in Palliative Care, it can be easy to assume that all clinical deterioration is due to worsening of the underlying disease. This case reminds us of the importance of a solid understanding of medication adverse effects and the need for a constant vigilance for these outcomes. Fortunately for Mr BT, the culprit medication was discovered and the symptoms resolved with discontinuation, thereby allowing him to get back to enjoying his life after what appears to be a very successful initial treatment of his serious underlying cancer.

References:
1. Macullum RW, Sowers JR, Hershman JM, Sturdevant RAL. Metoclopramide stimulates prolactin secretion in man. J Clin Endocrinol Metab. 1976;43:1148-1152.

2. Madani S, Tolia V. Gynecomastia with metoclopramide use in pediatric patients. J Clin Gastroenterol. 1997;24:79-81.

3. Ehrenkranz RA, Ackerman BA. Metoclopramide effect on faltering milk production by mothers of premature infants. Pediatrics. 1986;78:614-620.

4. Bernard SA, Bruera E. Drug interactions in palliative care. J Clin Oncol. 2000;18:1780-1799.

5. Wood GJ, Shega JW, Lynch B, Von Roenn JH. Management of intractable nausea and vomiting at the end of life: “I was feeling nauseous all of the time…nothing was working”. JAMA. 20087;298:1196-1207

Huntington’s Disease: How Can Palliative Care Help?

ctsinclair@gmail.com (Christian Sinclair, MD) — Thu, 12 Feb 2009 21:24:00 +0000

Dr. George Huntington Image via Wikipedia

By Mamta Bhatnagar, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 11 - December 2008
(Original PDF)

Case

A 43-year-old woman, WM was diagnosed with Huntington’s Disease (HD) in September 1996. In 1997 WM stopped working due to disability related to her disease progression. Since 2004 she was living at a skilled nursing facility where her care had been stable until 4 weeks prior when her choreiform movements intensified, her oral intake declined, and she was unable to rest or sleep due to incessant body movements. Several medication changes at the nursing facility were unsuccessful and she was transferred to an inpatient hospice unit for end-of-life care. On exam the patient appeared younger than her stated age and cachectic. She was non-ambulatory. She had flailing involuntary movements of her arms and legs, which made a comprehensive physical examination difficult. Her speech was unintelligible and skin on her arms and legs showed bruises and open wounds that she sustained when she hit any furniture around her. The patient’s husband and power of attorney’s primary goal was to control her movements and allow her to rest.

Brief overview of Huntington’s disease

HD is a neurodegenerative disorder that is inherited in an autosomal dominant fashion so that each child of an affected patient has a 50% chance of developing the disease. Most patients develop symptoms in their forties and fifties. Symptoms are usually a triad of motor, cognitive, and psychiatric issues. The motor symptoms involve impairment in voluntary movements and appearance of involuntary movements called chorea (hence the name Huntington’s chorea). Impairment in voluntary movements results in loss of manual dexterity, slurred speech, swallowing difficulties, problems with balance, and falls. The motor symptoms worsen in the middle stages followed by rigidity in the late stages of the illness. Cognitive symptoms manifest in the patient’s inability to perform complex tasks with loss of speed and flexibility, progressing to global impairment in the later stages of the disease. Psychiatric symptoms most commonly include depression. Patients may also manifest irritability, anxiety, agitation, impulsivity, apathy, social withdrawal, and obsessiveness.

Treatment

Medications do not alter the progression of HD. Patients are vulnerable to cognitive side effects of pharmacologic therapy. Motor symptoms are usually managed using either neuroleptic agents such as haloperidol and/or benzodiazepines. There are no medications to treat swallowing difficulties or rigidity that occurs later in the disease. Depression is treated with serotonin specific reuptake inhibitors such as sertraline and paroxetine. The mainstay of therapy for HD remains non-pharmacologic management. Padding of furniture and weights on wrists and ankles will help reduce injuries and the amplitude of involuntary movements respectively. As swallowing difficulties progress, the food consistency can be softened and pureed. Eating is usually supervised, and the patient is given time to eat with no distractions. Caregivers should be trained in Heimlich maneuver. Cognitive impairment and difficulties in communication can be eased by giving the patient time to answer and asking closed-ended questions. Establishing routines around the patient and activities that adjust to his or her cognitive level help to decrease anxiety and allow cognitive stimulation. Identifying and avoiding triggers for emotional outbursts and providing family and caregiver supports are measures to help manage behavioral manifestations of the disease.

Survival

Average survival time after diagnosis is 15 to 20 years. Disease course is variable, and every patient is unique, which makes prognostication difficult.

Back to the Case

Initial attempts to sit the patient in a padded wheelchair and feed her proved unsuccessful. A trial of phenobarbital was initiated to allow her to rest and monitor response. All furniture was removed from her room. Several mattresses were placed on the floor and padding was applied to the walls. Over the course of 3-4 days the patient’s movements subsided, and she was able to stay awake. Her appetite improved, and she drank shakes. Feeding times were unique; one staff member would hold WM in her lap while the other would feed her. Over a period of 2 weeks, WM thrived. Although she was incontinent for bowel and bladder, she would call out to the nursing staff when she needed care. Her room was decorated with her favorite sport team jerseys and family photos. Her husband visited daily and was able to participate in feeding times, and together they watched sports events on TV. WM’s only medications were oral fluoxetine, laxatives, antacids and phenobarbital. While we initiated our treatment plan to relieve distress and attempted palliative sedation therapy as a means to relieve what appeared to be refractory symptoms at the end of life, the patient’s response was so dramatic that we now planned for her care for the next several weeks at a nursing facility. Our objective was to achieve a smooth transition for WM, and we encouraged nursing facility staff to visit the hospice unit and witness her personal care and feeding. The patient was eventually transferred and has continued to be stable at the nursing facility. She has not required any medication adjustments.

References:
1. Aubeeluck A, Wilson E. Huntington's disease. Part 1: essential background and management. Br J Nurs. 2008;17(3):146-51.
2. Rosenblatt A, Ranen NG, Nance MA, Paulsen JS. A Physician's Guide to the Management of Huntington's Disease. Second Edition. Huntington's Disease Society of America 1999.

Staff Coping With Terminal Illness

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 30 Jan 2009 03:59:00 +0000

By Justin Engleka, MSN, CRNP, CHPN

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 1, No. 9 - April 2002
(Original PDF)

Case:

Miss C. is a 28-year-old female with a history of a spinal cord tumor with metastasis to the brain. She was admitted to the hospital for further management of related complications. She had suffered with multiple neurological complications, including paraplegia since 1997. She had endured many procedures, surgeries, treatments, and hospitalizations prior to the Palliative Care Team’s meeting with her on this admission. Her disease had become more extensive. She had recently received chemotherapy, and developed complications likely related to this. When she arrived at the hospital, it was determined that she had suffered an intraventricular hemorrhage. For this reason, she was intubated and placed on the ventilator.

During her hospital stay, she had multiple complicated medical issues: the intraventricular hemorrhage, quadriplegia, infection, hypotension, and delirium. Communication with this patient was difficult and painstaking, but not impossible. Behavioral medicine was recruited to assist with communication efforts and help the family with coping techniques. The Palliative Care Team met with the patient and her family daily to assist them in setting the goals of care. The primary service was an integral part of the communication process. During the previous years of cancer treatments, Miss C. had developed very close bonds with this staff.

Miss C. began to express concerns about the therapies she was receiving. After long, detailed conversations with her, we recommended that some limits be placed on medical interventions such as resuscitation, and blood pressure support. The patient and family agreed. She was successfully discharged to a ventilator facility closer to her family.

Discussion

“Why are you afraid? I am the one who is dying…
But please believe me, if you care, you can’t go wrong…
Death may get to be routine to you, but it is new to me.”
-Anonymous

Dealing with the impending death of a patient is perhaps one of the most difficult tasks that a nurse or physician can encounter. For staff who deal with these types of issues on a day-to-day basis, it can become even more distressing. Traditionally, the intensive care units care for the most critically ill patients. Unfortunately, death becomes an inevitable part of the experience. How each staff member deals with that grief and sorrow varies greatly. It is well acknowledged that the death of a loved one under any circumstance is a tremendous loss for that family. Little is written or spoken about the grief and coping of staff who deal with dying patients on a daily basis. This case illustrates that not all patients who die in the hospital are elderly, frail patients who have lived a full life. Understandably, nurses, doctors, and staff would view this case in a different light. For many of us, we see a young, 28-year-old girl who reminds us of our wives, our sisters, our daughters, or ourselves. 28-year-old women are not supposed to die.

This case also reminds us that we cannot endure the stress and grief alone. While it is important to maintain consistent contact with our patients, we also need to know our limits. Traditionally, nurses are caretakers and nurturers. They typically “vent” about these types of cases with their colleagues and managers. It is also nice to know that there are services within our system for patients, families, and staff. Staff should know that they need to take care of themselves, too. Services like social work, behavioral medicine, palliative care, clergy, and family support services are readily available to consult with staff members about their concerns and grief.

References:
1. Reimer, J.C., Davies, B., & Martens, N. (1991) Palliative Care: The nurse’s role in helping families through the transition of “fading away.” Cancer Nursing, 14(6), 321-327. Vachon, M.L.S.,

2. The stress of professional caregivers in Doyle, D. et al eds. Oxford Textbook of Palliative Medicine, New York, Oxford University Press 1998, 919-929.

Coordination of Care for People at the End of Life

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 16 Jan 2009 04:11:00 +0000

By Linda A. King, MD and Nicole Fowler, MHSA

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 1, No. 8 - March 2002
(Original PDF)

Case:

A 67-year-old man with end-stage congestive heart failure presented to the hospital with worsening respiratory distress and was intubated in the emergency room. Despite a week of intensive efforts, he could not be weaned from the ventilator and remained dependent on intravenous dobutamine for blood pressure support. The ICU staff met with the patient and family to discuss the medical situation and options for care including withdrawal of life support. The patient did not want to continue on long-term ventilatory support nor did he want to die in the hospital. The patient expressed to the care team a strong desire to leave the hospital and to die at home.

A palliative care consultation was initiated to support the patient and family and to assist with a discharge to home. The patient, family, ICU team and palliative care team discussed potential options for discharge and decided on a plan to transport the patient home with ongoing mechanical ventilation and inotropic support. This option allowed the patient to be comfortable at home with his family before removing the ventilator and providing medications for comfort that would likely be sedating. Efforts to carry out this plan were hindered by the reluctance of home care and hospice agencies to participate in this “unusual” and expensive plan that provided little or no reimbursement (i.e. withdrawal of life-support in the home setting while the patient continued on Dobutamine).

Following hours of coordination and planning, the physician from the Palliative Care service and a nurse from the ICU rode home in the ambulance with the patient where they were met by many of the patient’s family and friends and a private duty nurse to support the patient and family. After a few hours of visiting with his loved ones, the patient indicated that he was ready for the ventilator to be withdrawn. Intravenous morphine and ativan were administered until the patient was comfortable, then the endotracheal tube was removed. Additional medication was administered intermittently to maintain adequate comfort and the patient died comfortably at home a few days later. The family expressed their gratitude that the patient’s wish to die at home was achieved.

Discussion

For many patients facing a life-threatening illness, death at home is viewed as a desirable and even essential element of a “good death.” Patients in the hospital expected to die imminently after the withdrawal of life-support do not typically have this option because of the obstacles and lack of payment incentives for coordinating this type of care. Withdrawal of life support in the home can provide patients and families with the opportunity to achieve their goal of dying in the familiar setting of their own home at a lower cost than the average cost of care in an ICU.

However, in our current care system it requires extenuating circumstances and significant coordination and planning to assure that patients and families are well supported and the patient’s comfort is maintained. When the goals of care shift for seriously ill patients from a disease-specific and curative approach to an approach that focuses on comfort, symptom management and other personal preferences for care (such as wanting to die at home), the health care system is often inadequate and discontinuous. One reason, as in our highlighted case, is that “ownership” for this type of coordination does not exist and few providers (home care and others) are willing to assume this role because most insurance programs (such as Medicare) will not pay. Since most care is reimbursed according to location, it is difficult to provide comprehensive services that meet the changing goals of patients as their disease progresses.

Public policies and financial incentives that encourage and reward hospitals, home care agencies, nursing homes and hospices for seamless care need to be established. Surely to compliment our modern care system and life prolonging technologies we should be able to develop a reliable and sustainable system that also relieves symptoms, honors preferences and supports patients and their families at the end of life.

References:
1. Lynn, J. Serving patients who may die soon and their families. JAMA 2002;285: pp. 925-932.

Using Cultural-Specific Music to Alleviate Symptoms of Anxiety and Depression

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 02 Jan 2009 05:43:00 +0000

By Erin Hedden, Music Therapy Intern

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 10 - November 2008

Case:

Ms. Z was a middle-aged Colombian woman with pulmonary hypertension and was awaiting a double lung transplant. Her presenting symptoms included extreme shortness of breath with minimal exertion, tiredness, and chest pain. A palliative care consult was requested for support and symptom management for anxiety and depression. She was also very concerned about her bills. She had trouble concentrating, was unable to watch TV or use her laptop, and was constantly tearful. Through palliative care, a consult was obtained for music therapy. In the context of music therapy, her anxious and depressive symptoms were significantly diminished by using music that was specific to her native culture.

Discussion
Music therapy has consistently been demonstrated to help alleviate symptoms of anxiety and depression, especially when the implemented music is a type of music that is preferred by the patient. In fact, a study researching the effects of subject-preferred music found that subjects who listened to their preferred music exhibited an increase in positive mood if their pre-music mood was negative. It also found that subjects listening to preferred music maintained a positive mood if the subjects’ pre-music mood was positive (Wheeler 1985).

Since Ms. Z was a Colombian immigrant, there were many times that she had family members and friends with her to both support her and translate some of the more difficult conversations that were in English. Though this author did know rudimentary Spanish, and did successfully implement short phrases, it was the music that became the common language throughout each session.

The first music therapy session was met with much enthusiasm and laughter from Ms. Z’s family and friends. Ms. Z was visibly anxious and nervous as she sat in the corner, but as she began to watch those around her enjoying themselves, her face softened and she smiled from behind her oxygen mask. The two attending interns closed the session having played some of the requested music, but with the momentous assignment to learn many more songs. Countless hours were spent learning songs by one of her favorite artists, Juanes, who is famous in Colombia and other South American and Spanish-speaking countries.

The second session was filled with a myriad of their favorite Spanish songs. They sang every song along with the attending interns, laughing and crying at the same time. Ms. Z was visibly relaxed and at peace. She continued to enjoy music therapy after she got her double lung transplant. Through the implementation of music therapy, her anxious and depressive symptoms were significantly diminished through singing, the use of percussion instruments, and by using her preference of cultural-specific music.

Through singing, she used her lungs—both before and after her double lung transplant. Even when Ms. Z was only able to whisper, she was still stretching her new lungs while “mouthing” the words she knew from memory. It distracted her from the monotony of being hospitalized, from the bills she couldn’t pay, and from her constant medical problems. It fostered a deeper and more meaningful socialization with her loved ones, and helped her to find cultural familiarity within someone else’s culture. Singing also gave her choices: she could participate or watch; she could choose which song she wanted to hear; she could choose which artist she wanted to hear; and she could choose the language with which she wanted to surround herself. It also gave her a sense of ownership and pride that the attending interns learned these songs specifically for her.

Using percussion instruments had its own benefits: it was a less threatening way to participate in the music-making experiences; it gave another series of choices for her to make; and because there was a wide array of South American instruments, it was a physical and tangible connection to her cultural heritage.

Music can help patients to appreciate the beauty and wisdom of their own cultural backgrounds and promote positive feelings within them that can be tapped into when celebrating and coping with life’s highs and lows (Chase 2003). By validating Ms. Z’s culture and bringing it into her hospitalization, music therapy fostered a sense of normalization and familiarity within the hospital walls which to her had previously represented feelings of anxiety and depression.

References:
1. Chase, Kristen M. "Multicultural Music Therapy: A Review of Literature." American Music Therapy Association Music Therapy Perspectives 21 (2003): 84-88.

2. Wheeler, Barbara L. "Relationship of Personal Characteristics to Mood and Enjoyment After Hearing Live and Recorded Music and to Musical Taste." Psychology of Music 13 (1985): 81-92.

Antiobiotic Use in the Dying Patient

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 12 Dec 2008 05:59:00 +0000

By David L. Patterson, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 1, No. 7 - January 2002
(Original PDF)

“They thought that the Titanic was unsinkable. They thought she would last forever.
That’s what some people think about antibiotics”.

Case:

Richard (not his real name), a 72 year old man with metastatic hepatocellular carcinoma, congestive cardiac failure (ejection fraction 14%) and chronic renal impairment was admitted to hospital with possible aspiration pneumonia. Intravenous levofloxacin and clindamycin were commenced. By the 7th day of admission his respiratory status had improved somewhat but he developed diarrhea (six liquid stools in one night).

On the 10th day of admission, his respiratory status had worsened again and a portable radiograph showed new infiltrate. Since extension of his pneumonia could not be distinguished from pulmonary edema resulting from his congestive cardiac failure, the patient was treated with diuretics plus antibiotics (piperacillin/tazobactam). The microbiology laboratory called to say that his C. difficile toxin was positive and that his rectal swab for vancomycin resistant enterococci (VRE) was positive.

By the 16th day of admission, the patient’s condition was clearly deteriorating. Despite supplemental oxygen his oxygen saturation was 84%. He was somnolent and would rouse only to painful stimuli. His BUN had risen to 104. The treating team discussed transfer to the intensive care unit for mechanical ventilation and dialysis. However they noted an advance directive written four months ago, in which the patient stated that he did not wish to undergo mechanical ventilation. Upon discussion with his wife and daughter they frankly noted that his quality of life had been extremely poor and that they did not feel that further aggressive intervention was what Richard would really want. The patient continued on levofloxacin, piperacillin/tazobactam, clindamycin and metronidazole until his death 20 days after hospital admission.

Discussion

Richard’s case raises two questions for discussion. Both relate to antibiotic use.

Clostridium difficile diarrhea

Fecal incontinence due to C. difficile is a miserable experience for the dying patient and their care-givers. Other adverse consequences of C. difficile infection include dehydration, prolonged hospital stay and even toxic megacolon and death. Prior antibiotic exposure is seen in >99% of patients who develop C. difficile related diarrhea. Curtailing unnecessary antibiotic use is the major way in which occurrence of C. difficile can be reduced.

Commonly implicated antibiotics in outbreaks of C. difficile include clindamycin and advanced generation cephalosporins. Increasingly, quinolones (such as levofloxacin) are also found to be associated with C. difficile diarrhea.

In view of the frequent association between clindamycin and C. difficile, clindamycin should no longer be used as a first-line treatment in our hospitals. Metronidazole is usually a good option where an antibiotic with anti-anaerobic activity is required. In some cases of head and neck infection, coverage equivalent to that provided by clindamycin can be by way of ampicillin/sulbactam or ampicillin plus metronidazole.

Quinolones should be reserved for a few specific indications (for example, ventilator-associated pneumonia where a resistant Gram negative bacillus is likely to be implicated, chronic prostatitis, malignant otitis externa). It is not appropriate to use quinolones to “treat” organisms in the urine on the basis of a microbiology report, in the absence of symptoms and without a urinalysis indicating significant pyuria. First line therapy for community-acquired pneumonia is a macrolide and cefuroxime not levofloxacin.

Is antibiotic use appropriate for the dying patient in whom many other components of treatment have been withdrawn or withheld?

C. difficile related diarrhea is just one of the adverse consequences of antibiotic use. A frequently overlooked adverse consequence of antibiotic use is the development of antibiotic resistance. It is well known that many more patients are colonized with antibiotic resistant organisms (such as VRE) than those who are actually infected with them. Colonized patients represent a source of organisms that can be passed from patient to patient. Terminally ill patients with high nursing care requirements represent a high risk for the transmission of antibiotic resistant organisms via the hands of their caregivers.

The ethics of the choice between the interests of present terminally ill patients and the interests of future patients who perhaps have a better prognosis has been recently discussed (Marcus 2001). In patients where antibiotic therapy offers no clinical benefit, and other therapies have been withdrawn or withheld, the balance between advantages and disadvantages of antibiotic therapy is influenced heavily by the “public health” benefit of limiting antibiotic use and avoiding development of a pool of antibiotic resistance. An exception would be use of antibiotics to resolve an infection that is causing painful or distressing symptoms.

Antibiotics are a limited resource. Please use them wisely.

References:
1. Marcus EL, Clarfield AM, Moses AE. Ethical issues relating to the use of antimicrobial therapy in older patients. Clinical Infectious Diseases 2001;33:1697-1705.

Palliative Sedation Therapy

ctsinclair@gmail.com (Christian Sinclair, MD) — Thu, 27 Nov 2008 04:34:00 +0000

By Susan Hunt, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 9 - October 2008

Case:

You are asked to see Mrs. RT, a 44-year old woman with end-stage COPD. She was admitted to inpatient hospice with increased anxiety, hopelessness, and pain “all over.” She says she is tired of being sick and exhausted, and wants to be “put to sleep.” She has heard about “terminal sedation” and is angry it hasn’t been offered. She lives with her husband and adult children who work full-time and is upset they can’t all stay home with her. She experiences dyspnea with activity, and uses a wheelchair, but can independently transfer to bed and toilet. Your exam reveals she is awake and alert, neither delirious by the confusion assessment score (CAM), nor suicidal. She is cachectic, tachypnic, and has generalized muscle atrophy. She lacks signs of infection or localized pain. You estimate her prognosis in months. She takes medications erratically for symptom control.

What is Palliative Sedation Therapy (PST)?

Patients and families sometimes have heard or been told about “terminal sedation,” but it is a frequently misunderstood term and therapy. The term “terminal sedation” suggests the goal of the therapy is hastening death for terminally ill patients, when in fact the goal is symptom relief. Therefore, the term “palliative sedation therapy (PST)” is much preferred since the goal of PST is relief from intolerable and untreatable symptoms, not shortening a patient’s life. An international panel of palliative care experts recently reviewed the medical literature on PST and published their recommendations for standardizing our understanding of this therapy1. They recommend the following definition: “Palliative sedation therapy is the use of specific sedative medications to relieve intolerable suffering from refractory symptoms by a reduction in patient consciousness.” They emphasize that palliative sedation is distinct from euthanasia while acknowledging lively debate on this issue.

The panel’s position is based on their assertion that hastening a terminally ill patient’s death is not the goal of PST. Other points of difference between PST and euthanasia are the principle of titration to comfort rather than to death, and PST’s reversibility.

What are refractory symptoms?

Refractory symptoms are considered symptoms for which all possible treatments have failed. A patient experiencing refractory symptoms must be differentiated from a patient who has symptoms that are difficult to treat. Refractory symptoms are symptoms that the palliative care physician and team determine cannot safely be relieved by invasive or noninvasive interventions. Expert panel members recommend Cherney’s definition of refractory symptoms: “Refractory symptoms are symptoms for which all possible treatment has failed, or it is estimated that no other therapies exist within the patient’s time-frame or tolerable risk-benefit ratio.”

When is PST considered?

PST is considered for patients with refractory symptoms only after discussions with the patient and/or family, the caregiving team, and the palliative care expert. The most frequent reasons for PST have been refractory delirium or restlessness, dyspnea, pain, and nausea/vomiting. The use of PST or psychological or existential distress is rare, and initiated only under exceptional circumstances. PST is considered only in the last hours to days of life.

Experts recommend a systematic and inclusive process to determine if PST appropriate, which includes the patient, if possible, designated surrogate and caregivers, and addresses the patient’s values, beliefs, and goals. If PST is chosen, then the specific intervention is discussed and reviewed, instituted, and carefully monitored. Decisions about nutrition and hydration are discussed separately from the decision to offer PST.

Medications used for PST include benzodiazepines (usually midazolam), except for delirious patients, phenobarbital, or propofol. Opioids are not recommended for PST because even high doses may not result in sedation.

Since the aim of PST is the relief of refractory symptoms, doses of sedatives are carefully chosen to relieve distress by reducing a patient’s level of consciousness and are not excessive. The degree of sedation can vary from superficial to deep sedation. Initial doses of sedatives should be small enough to allow a patient to communicate periodically.

Refractory symptoms may respond to temporary sedation, since a patient’s ability to tolerate symptoms may be improved following rest provided by sedation. Experts identify three levels of continuous sedation. With mild sedation, the patient is awake, but has a lowered level of consciousness. Moderate sedation results in stupor, so that the patient is asleep, but can be awakened to communicate briefly. With deep PST, the patient is unconscious and unresponsive. PST is frequently monitored and assessed, with attention to the needs and goals of both patient and family.

Back to the Case:

You convene a meeting with the patient, her family, and the palliative care team. After asking open-ended questions and listening to concerns, you offer information about PST but say that you think her symptoms can be treated. You offer medication changes including around the- clock rather than as needed opioids for relief of dyspnea and pain, and a comprehensive treatment plan for her anxiety and depression. Her family finds ways for her to be less isolated, and the hospice team offers additional services and frequent monitoring. Although she is skeptical, she is willing to consider these options as possibly improving the quality of her life.

References:
1. De Graeff A. Dean M: Palliative Sedation Therapy in the Last Weeks of Life: A Literature Review and Recommendation for Standards. Journal of Palliative Medicine 2007; Vol10 (1); 67-84.

2. Cherny NI. Portenoy RK: Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. Journal of Palliative Care 1994;10;31-38.

Trapped Inside a Failing Body

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 14 Nov 2008 05:33:00 +0000

By Rev. Carol Henley, M.Div

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 8 - September 2008

Case:

JD is a 66-year-old African-American female with cardiomyopathy and pulmonary hypertension who has been in and out of the hospital for the past two years. She had biventricular assist devices placed in August, 2007. Since then, she has experienced numerous setbacks and subsequently has been on and off the heart-lung transplant list. Most recently, she went to the OR to have her current LVAD replaced with a smaller unit. The procedure was aborted.

JD is divorced with no children. Prior to hospital admission, she lived alone, independently, in a one-story home. A supportive brother and sister live nearby. She is very sharp, speaks her mind, and has no patience for what she perceives as incompetence or “stupidity.” She expects staff to communicate with her directly and has no tolerance for ambiguity, mixed messages or superficiality. She has alienated several of the staff who don’t meet her expectations.

Over the past couple years, I have visited JD numerous times. In my first visit, she told me where to sit and told me to read certain passages of Scripture to her. (She has taught adult Bible study and has been very active in her church). I went along with her request (i.e., “order,”) and we actually had a stimulating theological discussion. Our visit ended with prayer. After this first visit, she no longer told me what to do. In subsequent visits, she shared her life story. I found that gently kidding around with her diffused her intensity. We spent many visits with her telling me about her life from childhood on, and we’ve shared much laughter. I enjoyed celebrating with her those memories that gave her joy.

In the last few months, her emotional ups and downs have become more pronounced. She was focused on getting a heart-lung transplant, which turned out not to be an option. She faced a surgery with a questionable predicted outcome, knowing she might die on the operating table. That surgery ended up being aborted. I have seen her at all-time emotional lows as well as in periods of bouncing back. Spiritually, she says she knows that God is with her; she has “no doubts” about that. She also says she must make all decisions, including life and death decisions, on her own – without God’s help.

Intervention:

The anchor in all my visits with her is prayer—prayer for guidance for her in decision making, prayer that lifts all her specific concerns and joys to God. We always hold hands in prayer, which she anticipates and appreciates. The healing aspects of this relationship are consistency and love. In the time we spend together, JD has shared precious, sometimes outrageously funny memories of her life. I have lifted up these memories to God in prayer with her, sometimes in a humorous way. My hope is that rather than compartmentalizing her spirituality she will allow God more and more into her decision making, that she will let God carry the weight of her burdens. This seems to be difficult for her, since she is so fiercely independent.

More and more, she seems now to be dealing with the prospect of her earthly life ending. While she remains trapped in a failing body with future prospects dim, she is now looking at her life with a sense of “well done, thou good and faithful servant” (Matthew 25:21) which is the ultimate healing.

Discussion:

Addressing quality of life is essential for patients with prolonged hospital stays. Patients on LVADS or BIVADS are physically restricted. While the body may be restrained, the mind is free to roam. Well-being must be viewed holistically, with emotional and spiritual needs being addressed. One researcher found that patient coping strategies include family support, religious convictions, and diversional activities, and that best way to support these patients is to establish a trusting relationship, foster independence and incorporate humor into their care. (Savage)

References:

1. Savage, Laura, RN, MSN (2003) Quality of Life among Patients with a Left Ventricular Assist Device: What is New? AACN Clinical Issues 2003 Feb. 14 (1) pp.64-72.

2. Savage, Laura, RN, MSN (1999) Life With a Left Ventricular Assist Device: The Patient’s Perspective American Journal of Critical Care Vol. 5, No. 5, pp. 340-343.

Finding a Language, Creating a Space

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 17 Oct 2008 04:47:00 +0000

By David Barnard, Ph.D.

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 1, No. 4 - October 2001
(Original PDF*)

Case:

Mr. L.O. was an elderly Russian immigrant to Canada, admitted to the Palliative Care Unit of a Canadian hospital with advanced rectal cancer. When L.O. was first presented to the multidisciplinary team, his major problems were identified as persistent rectal pain and anxiety. The initial workup of the pain suggested a neuropathic component, and adjustments were made to L.O.’s medications. His complaints of pain and anxiety persisted over the next several days.

L.O. then began to experience terrifying nightmares. Even during the day, when he was awake, he would have what he called “flashes” of frightening imagery, but the nightmares were the worst. L.O. was so fearful of them that he resisted falling asleep as much as he could. The images were horrific, often violent, with L.O. sometimes being the victim of the violence, sometimes the perpetrator. A CT scan was ordered to investigate the possibility of brain metastases as a contributing factor.

At the same time, the attending palliative care physician had a long interview with L.O., in which they explored the content of the nightmares in depth. L.O. was an amateur artist, and the physician suggested that he might sketch the images in his dreams, or, if not the exact images, some rendering of how they made him feel. L.O. did this. Subsequent conversations revealed that L.O. was estranged from his children; the main reason that he needed to be in the Palliative Care Unit was that none of his children cared enough about him to support him while he lived at home. L.O.’s sketches showed a small figure—himself—cowering at the bottom of a deep pit, with another figure standing far above, looking down.

The physician suggested that L.O., who had become physically well enough for a weekend pass, bring some of his previous paintings back with him to the Palliative Care Unit. Within a few days, the sound of hammering could be heard from L.O’s room. He was hanging his pictures, 15 or 20 in all. Most were landscapes, but there were also a portrait of a lovely young woman, and a winter scene, all in black and silvery white, of a snow- and ice-lined brook leading into a dark woods. The next morning L.O. reported that he had dreamed of eating a chicken dinner.

Discussion:

Two features of this case are striking. The first is the necessity of combining medical and psychosocial approaches to L.O.’s nightmares and overwhelming anxiety. Both the CT scan and several psychoactive medications were appropriate and helpful. But it was the in-depth exploration of the content of the imagery, and even more, the suggestion that L.O. use his art to capture his emotional state in drawings, that appeared to unlock the insights and emotions that lay beneath the anxiety and terror. The physician succeeded in helping L.O. find a language to express himself more effectively and concretely than he had been able to do at a purely verbal level. The physician found a form of expression that “fit” the patient, even though that form was somewhat unconventional.

The second feature concerns the possibility of creating a living space in the Palliative Care Unit where L.O. could work his way to a feeling of peace and safety, despite his estrangement. This use of the inpatient palliative care service would almost certainly be impossible in the United States, with our minimal lengths of stay and our restrictive utilization review requirements. L.O. died in this Canadian palliative care unit many days after his physical and emotional symptoms had been brought firmly under control. But the inpatient environment remained critical to his spiritual well-being. Even though the Canadian health care system faces some of the same economic pressures as that in the U.S., the possibility still exists there for more flexibility to respond to the broadest range of patient or family need, compared to the limits imposed by hospice and palliative care financing in the U.S.

References:

1. Pratt A, Wood M (eds). Art Therapy in Palliative Care. London: Routledge, 1998.

2. Lynn J. Serving patients who may die soon and their families: The role of hospice and other services. JAMA, 2001, 285:925-932. (No open access pdf)

3. Raphael C, Ahrens J, Fowler N. Financing end-of-life care in the USA. Journal of the Royal Society of Medicine, 2001, 94:458-461. (Open access PDF avail from Journal and PubMed Central)

(CS: Minor formatting edits for readability)

One Man’s Journey Toward Deactivating His Implantable Cardioverter-Defibrillator

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 03 Oct 2008 03:35:00 +0000

By Ellen Redinbaugh, Ph.D.

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 1, No. 4 - September 2001
(Original PDF*)

Case:

Mr. C, a 68 year old widower with an implantable cardioverter-defibrillator (ICD) placed five years previously, was admitted to the hospital after his ICD discharged several times in one day. Each discharge was associated with severe pain, loss of consciousness, and heightened anxiety about experiencing future discharges. Evaluation of the ICD firing confirmed refractory ventricular tachyarrhythmias consistent with Mr. C.’s end-stage heart failure. Trials of anti-arrhythmic medications proved unsuccessful. The frequency of ICD discharges could not be reduced without deactivating the device (which would cause imminent death), yet leaving the ICD active would prolong Mr. C’s suffering.

When his primary medical team informed him about his medical condition and prognosis, Mr. C showed ambivalence about deactivating his ICD. He clearly stated to his health care team that he “did not want to live under these circumstances” and that “shutting off this pacemaker may be the best thing for me.” However, he did not like being left alone for fear his heart would stop and no one would be available to resuscitate him. His primary medical team consulted the Palliative Care Team (PCT) to discuss end-of-life options and goals with the patient and family. The PCT treated Mr. C’s anxiety with clonazepam and relaxation training, “supported” his ambivalence, and assisted with his discharge planning.

As the PCT continued working with Mr. C, it became apparent that Mr. C experienced tremendous remorse for “what I put my family through 20 years ago after my wife died.” Although his family openly stated that all was forgiven, Mr. C could not accept their reassurances – “I wish I could make it up to them.” The PCT initiated an intervention where Mr. C talked about his family members one at a time, and he described his happiest memory, what he appreciated, and what he loved about each one. His thoughts were written down, and the family was trained to continue the exercise until all family members were done. Mr. C was discharged with home hospice, and his family completed the PCT intervention at home. The day after Mr. C finished his individualized sentiments, he requested to have his ICD turned off. A representative from the ICD manufacturer came to Mr. C’s home and deactivated the ICD. Mr. C died two hours later in the comfort of his home and surrounded by his family.

Discussion:

ICDs are used to treat people at risk for sudden death due to ventricular tachycardia or ventricular fibrillation. They deliver an electrical charge to the myocardium during an arrhythmic event, and the “shock” allows the ventricle to resume a normal rhythm1. ICDs allow many people to enjoy a prolonged life without significant compromise to quality of life, but in cases of end-stage heart disease ICDs can cause significant physical suffering simply by doing their “job” - repeatedly normalizing arrhythmic events. Patient quality of life is further compromised by the severe anxiety associated with the fear of receiving a future shock2.

For patients with end-stage heart disease, deactivating the ICD can be a sound medical, ethical, and legal decision for them - albeit a difficult one. For Mr. C, his ambivalence about turning off his ICD was driven by his need for reconciliation with his family. Once this was achieved he calmly and peacefully made his decision to die. His case suggests that end-of-life decision making can be difficult for patients, and they may need time and guidance in completing their relationships with their loved ones before they can make the medical decision that is best for them.

ICDs can be deactivated in different ways depending on the urgency of the situation. In cases requiring immediate action (e.g., a patient is actively dying of end-stage cancer and his ICD fires causing the patient to go into convulsions), pacemaker magnets placed over the device deactivate it within seconds. In less urgent cases, the manufacturer and/or the electrophysiology service can assist with ICD deactivation. For patients at the end-of-life, turning off an ICD is similar to withdrawing a ventilator: the patient (or surrogate) has elected for comfort measures in lieu of aggressive medical care.

References:

1. Braun, TC, Hagen, NA, Hatfield, RE, Wyse, DG (1999). Cardiac pacemakers and implantable defibrillators in terminal care. Journal of Pain and Symptom Management, 18, 126-131. (No open access PDF)

2. Dunbar, SB, Warner, CD, Purcell, JA (1993). Internal cardioverter debrillator device discharge: Experiences of patients and family members. Heart Lung, 22, 494-501. (Open access PDF)

3. Quill, TE (1996). A midwife through the dying process: stories of healing and hard choices at the end of life. Baltimore, MD: Johns Hopkins University Press.

An Isolated Patient Who Wants to Die at Home

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 19 Sep 2008 03:30:00 +0000

By Justin Engleka, M.S.N., C.R.N.P.

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 1, No. 2 - August 2001
(Original PDF*)

Case:

Mary was a 58 year-old woman who was admitted to the hospital for management of a wound infection. Her past medical history included severe peripheral vascular disease, and she subsequently had bilateral, above-the-knee amputations. Her stumps were very necrotic, and did not respond well to antibiotic therapy. To further complicate her story, a routine imaging scan found suspicious lesions on both her lung and liver. This finding was highly suspicious for metastatic cancer since she also had a smoking history, significant weight loss and decreased appetite. Mary’s primary physician encouraged her to pursue a cancer workup, but she refused. She also decided that she did not want to pursue any other aggressive medical therapies that may prolong her life. Her only goal was to go back to her apartment where she could die in peace. The palliative care service was asked to become involved to help with discharge planning.

Since Mary previously lived alone, this was going to be a very difficult task. During her hospital stay, she became increasingly delirious, and it was clear that she would not be able to return home. We attempted to contact all of her relatives to recruit help. No one was able to take responsibility for her care at home, even with hospice assistance. So we attempted to make her hospital stay as pleasant as possible while these complicated issues were sorted out. We recruited a volunteer to sit with her several times per week to keep her company. Her delirium and agitation improved with the use of antipsychotics. Her pain had also improved after careful titration of her opiate and adjuvant medications. We also paid for a beautician to visit her here in the hospital. Mary was ultimately discharged to a local skilled nursing facility. To ensure continuity, our medical student on service wrote a letter to the attending physician there. We included some of the details of the care that we provided. We suggested that it would be very appropriate to provide Mary with some “luxuries” that would normally be contraindicated in her care such as milkshakes or ice cream.

Discussion:

Patients who do not have family or caregivers can create very challenging situations for hospital staff. Under usual conditions, palliative care extends the focus of care to family and friends of the dying patient. Family members are encouraged to create a home like environment in the hospital. Family photos, favorite music, or a blanket from home can make a hospital stay more pleasant. Patients that are alone often miss the comforts of home. According to Ferrell & Coyle, 2001, the discipline of palliative care provides physical, psychological, social and spiritual support to help the patient adapt to the anticipated decline, associated with advanced, progressive, incurable disease. Palliative care also alleviates isolation through a commitment to non-abandonment, ongoing communication, and sustaining relationships. The role of the volunteer and the medical student in this case was crucial. Volunteers are an integral part of the hospice and palliative care philosophy and approach. Beyond extending the available personnel, volunteers put a truly human, non-professionalized face on the provision of care.

References:

1. Ferrell, B.R., and Coyle, N. Textbook of Palliative Nursing. 2001. Oxford University Press, New York, 684.

2. Mount, B.M. Volunteer support services: A key component of palliative care. Journal of Palliative Care, 1992, 8(1):59-64. (no open access pdf)

Subscribe to Comments Only!

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 19 Sep 2008 03:00:00 +0000

Have you ever wondered what other people might be saying about a particular subject you see on any of the three Pallimed blogs? But to actually remember to go back and check the post is something you never get around to doing?

Well for Pallimed readers who subscribe via RSS* we now have a Comments Only Feed that will keep you up on the latest conversations on the posts. Each Pallimed blog (Main, Arts, and Cases) has its own individual subscription link in the left hand column.

Pallimed: Main Comments Only Feed (About 5-10/week)

Pallimed: Arts Comments Only Feed (About 2-4/week)

Pallimed: Cases Comments Only Feed (About 1-2/month)

We rarely get spam comments 2-3/month and we delete them within 2-4 hours usually, so this should not be a big deterrent. The 'Comments Only' subscription is not available for email subscribers at this time, but if you would like an email subscription option then email me directly or post a comment.

This post will be cross-posted to all three Pallimed Blogs. My apologies in advance for readers who see it multiple times.

*Really Simple Syndication.

Delay, Scheduling, Boards, Comments

ctsinclair@gmail.com (Christian Sinclair, MD) — Fri, 19 Sep 2008 02:03:00 +0000

Delay
Case Conferences are back after a month hiatus. Technically on a every 2 week schedule, only one post was skipped, but it just feels like a long time. So never fear, we are not leaving, there is still so much to post!

Scheduling
Case Conference posting will be moving to Thursday evenings to avoid crowding with Arts & Humanities (usually Monday evenings) and because the main Pallimed blog rarely posts on Thursday evenings. Still every two weeks for Case Conference posts.

Boards
The Case Conferences are a great tool for studying for the palliative medicine boards. I would encourage you to go to the UPMC Institute for Enhanced Palliative Care so you can get some of the archived cases.

Comments
We have a lot of readers but very few comments, so please feel free to add your two cents, anonymously or identified. And check out the new Comments Only subscription.

When Depression Isn't Depression:Understanding Hypoactive Delirium

ctsinclair@gmail.com (Christian Sinclair, MD) — Wed, 20 Aug 2008 03:38:00 +0000

By Kevin Patterson, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 7 - August 2008
(Original PDF*)

Case:

Mr. R is a 65-year-old man who retired as a high-level executive at a large business. He had been hospitalized with worsening pulmonary fibrosis and had ultimately received a double lung transplant. Following transplant, Mr. R suffered multiple complications over a period of three months. In these months, Mr. R was a participant in his own care during times of relative medical improvement. Yet his primary team noticed at the present admission that, he seemed to be withdrawn and was not engaging well with physical or occupational therapy. The team also noted that he had more difficulty concentrating when they went into the room to see him. The team expressed concern that the stress of a prolonged hospitalization was getting to him and/or that Mr. R might be suffering from depression.

The team requested a palliative care consult and, as the psychiatrist on the service, I was asked to see Mr. R. When I first examined him, I indeed found him to be quiet and withdrawn and not at all the "go-getter" that his wife described. When the palliative care doctor had initially seen the patient, she was concerned that he appeared to be confused at times, and my examination bore this out. Mr. R was lethargic and would drift in and out of sleep while we talked. With a little prodding, he revealed that he had noticed a "problem" with his thinking and frequently found himself to be unsure of where he was and why people were coming in and out of his room. He denied any hallucinations or paranoia.

Discussion:

It is very common for doctors to identify hyperactive delirium in patients. Hyperactive delirium is the disturbance in thinking that results from physical illness, medications, or various other etiologies and is characterized by a previously stable individual becoming disoriented, agitated, paranoid, and hallucinatory. It frequently results in a disturbance on the medical unit, and is therefore usually diagnosed. Far more common, but less frequently noticed (estimates run from 32-66% missed) is the condition known as hypoactive delirium. Hypoactive delirium is also a disturbance of consciousness wherein the patient's mental status waxes and wanes, but it frequently manifests with symptoms more like those observed in Mr. R: patients become withdrawn, display less motivation, have lower energy, and are quietly confused.

It is not uncommon for patients with this symptom set to be mistaken for depressed or even as simply lacking the motivation to improve medically. The incidence of delirium among hospitalized patients has been estimated at around 10%. Among patients nearing the end of life, these numbers increase to approximately 60%. It is known that untreated delirium results in increased morbidity and mortality in the 6 months following a hospitalization. Identifying and treating hypoactive delirium is therefore an important component of improved quality and length of life for palliative care patients.

The treatment for both hyperactive and hypoactive delirium is the same: identification and treatment of the underlying cause, and short-term use of antipsychotic medications to reduce disruptive symptoms. Mr. R was started on risperidone 0.25mg twice a day with additional doses available as needed. Within two days of starting this regimen, he was interacting more with his providers, reengaging in rehab, and having conversations with his wife that both of them found to be more successful. Mr. R. never endorsed symptoms that would suggest depression. He was better able to communicate his needs and participate in his care.

References:

1. Casarett D, et al. Diagnosis and management of delirium near the end of life. Ann Int Med 2001; 135 (1): 32-40. (open access pdf)

2. Rea RS, et al. Atypical antipsychotics versus haloperidol for treatment of delirium in acutely ill patients. Pharmacotherapy 2007; 24 (4): 588-94.(no open access pdf)

The Differential Diagnosis of Opioid Poorly-Responsive Cancer Pain

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 05 Aug 2008 04:51:00 +0000

By Robert Arnold, MD and Tamara Sacks, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 6 - July 2008
(Original PDF*)

Case:

Mrs. Smith is a 52-year-old woman with metastatic lung cancer diagnosed two months ago when she developed chest wall and right arm pain. Since then she has seen her primary care physician, an oncologist, and a palliative medicine physician. Her opiate dose was escalated from nothing to 200 micrograms of fentanyl without any pain relief. She was admitted to the hospital two days ago for uncontrolled pain and placed on a hydromorphone PCA. She is currently using 10mg/hr (continuous and bolus), still rates her pain as a 10 out of 10, and has developed nausea.

She describes her pain as a throbbing of the right chest wall and numbness, burning, and tingling down her right arm. Her physical exam is consistent with a lower brachial plexopathy. Her radiographic studies reveal metastases to the sternum and ribs and a right upper lobe mass invading the brachial plexus.

Given the patient is currently using almost 5 grams of oral morphine equivalents a day with no relief and probable opioid induced nausea, what is the next step?

Discussion:

While cancer pain can be relieved in 80-90% of patients using the WHO analgesic ladder, this case raises the question of what should be done when a patient’s pain is uncontrolled even on very high opiate doses. In this discussion, we will assume the pain is caused by tumor rather than distress from psychological causes (delirium, anxiety, addiction) or spiritual/existential suffering.

A key question is whether the patient has ever been responsive to opiates for this condition. If the answer is yes, the increased pain should lead to a search for a worsening of the underlying disease or a new cause of pain. Prior to concluding that a patient’s pain is not opioid responsive, one needs to make sure that the patient has had an adequate trial. The dose should be increased until the patient has pain relief or unacceptable toxicities develop. Aggressively treating the opiate’s side effects may improve the analgesic window. Control of the patient’s vomiting, hyperalgesia, myoclonus, delirium or drowsiness may make it possible to increase the opiate dose to an effective level. In addition, a Cochrane review suggests that rotating from one opiate to another may help decrease side effects and widen the therapeutic window. In addition, recent studies have shown that for patients with opioid responsive pain and uncontrolled side effects, an epidural pump leads to better pain management and is cost-effective.

If analgesia is still ineffective, one can add a drug that produces independent analgesic effects. For example, this patient seems to have both bone and neuropathic pain syndromes. The former may respond to steroids, non-steroidals, or biphosphonates, the latter to topical lidocaine, antidepressant, or antiepileptic drugs. While the strongest evidence supports tri-cyclic antidepressants, gabapentin, and serotonergic neuroepinephrine reuptake inhibitors for the treatment of neuropathic pain, one may have to try five or six agents (including agents such as clonidine, intravenous lidocaine, or mexelitine) to get a significant decrease in pain. A combination of these may also be needed. One should systematically add a co-analgesic and increase the dose until the maximal dose, pain relief, or intolerable side effects occur. A medication should be continued if it results in at least a 50% decrease in pain.

One should also consider non-pharmacological analgesic interventions. Acupuncture and behavioral interventions have been shown to help with pain syndromes. Radiation to the patient’s sternum and ribs may help with bone related pain, while a regional nerve block may help the neuropathic component. In addition radiopharmaceuticals such as samarium, can be considered in patients with pain secondary to diffuse bone metastases.

In very difficult cases, one may need to try and enhance the opiate’s analgesic effect. Drugs that antagonize the NMDA receptor, for example, have both direct analgesic effects or may reverse opiate tolerance, resulting in better pain management. The three drugs that are most commonly used are ketamine, methadone, and dextromethorphan. The use of these drugs should only be done with a pain or palliative care consultation.

While opiate unresponsive pain is not that common, it is very frustrating. Systematically approaching the problem will ensure that one develops the best treatment plan.

References:

1. Mercadante S, Portenoy RK. Opiate Poorly Responsive Cancer Pain Parts 1-3 Journal of Pain and Symptom Management 2001 Vol. 21 #1 page 144-150; Vol. 21 #2 page 255-264; Vol. 21(4) #3 page 338-354.

2. Smith, TJ, Staats, PS., Deer, T., et al. (2002). "Randomized clinical trial of an implantable drug delivery system compared with comprehensive medical management for refractory cancer pain: impact on pain, drug related toxicity, and survival." J Clin Oncol 20(19): 4040-9.

3. Fallon, M. (2008). "When morphine does not work." Support Care Cancer 2008: 16(7):771-5.

Acknowledgments: We appreciate input from David Weissman who helped us think through and provide part of the algorithm for this article.

“Do you have something stronger than this dilaudid?”The case for opioid rotation

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 22 Jul 2008 05:03:00 +0000

By Tamara Sacks, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 5 - June 2008
(Original PDF*)

Case:

Mr CC is a 67-year-old with NSCLC (non-small cell lung cancer) and metastatic disease to his mediastinum and left chest. He was admitted to the hospital for increasing right sternal chest pain over the past month. Pain is described as burning and non-radiating. There are no exacerbating or relieving factors. The pain is so bad that he has anorexia. The month prior to admission, he was started on Oxycontin, and his dose was titrated up 160 mg twice a day with Dilaudid 8 mg every 3 hours PRN (as needed). Despite dose escalation, his pain was unchanged. While in the hospital, a fentanyl patch and a dilaudid PCA (patient controlled analgesia pump) were added to the original regimen. However, no increased analgesia occurred.

A palliative care consult was obtained. His regimen was simplified to a Dilaudid continuous intravenous infusion (CI) and PCA. Doses were escalated to 4 mg/hour CI and 4 mg PCA with 8 mg RN dose q1 hour. He reported no change in his pain. Co-analgesics of NSAIDS, Tylenol, dexamethasone, and a TCA (tricyclyic anti-depressant) were tried. Radiation oncology was consulted and saw no lesions to irradiate. The patient began to complain of worsening pain. As he continued to complain of 7-10/10 pain, the patient was changed to morphine and titrated to 10 mg continuous infusion and 10 mg PCA dose. Marked analgesia was noted. Attempts to transition to methadone were unsuccessful, as his need for morphine PCA doses remained unchanged. Despite initial complaints of sedation on morphine, the patient’s pain scores decreased to 3/10. As such, he was continued on morphine and discharged from the hospital on a PCA.

Discussion:

Opioid rotation, or trial of an alternative opioid, is commonly practiced when a patient’s pain responds poorly to one opioid or intolerable side effects develop. These intolerable side effects may include nausea, vomiting, sedation, or even hyperalgesia. Although rotation is a common practice, a Cochrane review in 2004 found that evidence to support the practice for opioid rotation was anecdotal and in non-controlled studies. Randomized trials were suggested. Since that time, several prospective studies have been performed where opioid analgesic effect was inadequate or side effects to the opioid were intolerable. Studies by both Narabayashi et al. and Wiraz et al. investigated rotation to an alternative long acting opioid, dilaudid or oxycodone. In addition, patients had increased analgesia compared to the prior regimen. Often the effective equianalgesic dose in these studies was greater than the prior dose, suggesting that prior side effects may have been dose limiting. More is being learned about the pharmacokinetics and pharmacodynamics behind opioid metabolism. It is clear that there is variability between individuals. Some of this may be secondary to disease states (i.e. renal or hepatic impairment), or the effect on metabolism by other drugs. Other differences are due to genetic variations.

Inherited differences in opioid receptors, channels, and metabolism to active and inactive compounds have been found. These differences may extend to transporters effecting bioavailability from the GI tract to even penetration of the blood brain barrier. This variability may account for differences in effectiveness and side effects from one patient to another. For example, “non analgesic responders” to methadone were found to have lower blood levels of the drug when compared to the same dose with “responders.” This suggests that the “nonresponders” may actually just clear methadone faster. It is frequently cited that 5-10% of the Caucasian population has the inability to convert codeine to its active metabolite, making it an ineffective medication in those individuals. Differences in metabolism have also been found with tramadol and oxycodone. In trying to obtain adequate analgesia with these medications, large doses may be tried with the development of side effects.

When switching to a different opioid, it is recommended to decrease the dose by 25-50% and even greater when switching to methadone. The rationale behind this has been “incomplete cross tolerance” and the concern that a patient may be more sensitive to the side effects of the second opioid, especially sedation. Understanding possible individual genetic variability, gives this practice even more credence.

Mr. CC was tolerating 20 mg IV dilaudid /hour without analgesia. His basal rate of 4 mg/hour dilaudid may be equianalgesic to 20-30 mg IV morphine hour. Given his profound tolerance to IV dilaudid and oral oxycodone, a conservative CI of 7 mg morphine/hour was started with frequent PCA doses available. Even with sub-equianalgesic dosing, he noted marked analgesia.

When doses of an opioid are escalated without apparent benefit and/or with side effects, opioid rotation should be considered. An individual’s biochemistry may determine if a particular opioid regimen will be successful and tolerated.

References:

1. Smith, Howard S. “Variations in Opioid Responsiveness.” Pain Physician 11:237-248, 2008. (free pdf available)

2. Narabayashi, Masaru et al. “Opioid Rotation from Oral Morphine to Oral Oxycodone in Cancer Patients with Intolerable Adverse Effects: An Open- Label Trial.” Japanese Journal of Clinical Oncology 38: (4)296-304. 2008

3. Quigley C. Opioid switching to improve pain relief and drug tolerability. “Cochrane Database of Systematic Review 2004”, Issue 3. Art. No.: CD004847 DOI: 10.1002/14651858.CD004847.

*Slight editorial changes were made for readability.

A Patient Who is Anxious and Short of Breath

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 08 Jul 2008 05:05:00 +0000

By Linda King, M.D.

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 1, No. 1 - July 2001*
(Original PDF**)

Case:

Jane (not her real name), a 66 year-old woman with advanced COPD, has been hospitalized 5 times in the last six months for shortness of breath. During the current admission, she has been anxious, tearful, and stated to her nurse “I don’t know if it’s worth it anymore.” Nursing staff suggested a palliative care consultation to assist with managing Jane’s symptoms.

During her initial meeting with the palliative care team, Jane reported that she sees herself “going down hill” and is frightened of dying, specifically of suffocating. The palliative care team reviewed Jane’s recent clinical course and current medical regimen with her primary team and the other consulting teams. Given her persistent symptoms despite maximal therapy for her COPD, the palliative care team suggested a trial of opioids and benzodiazepines to manage her persistent dyspnea and associated anxiety.

Jane began taking:

oxycodone 5 mg every 4 hrs RTC (round the clock) for dyspnea
oxycodone 5mg q2 hr prn (as needed) for dyspnea
lorazepam 0.5 mg every 6hr for anxiety

and noted significant improvement. A fan was placed in her room and she continued on supplemental oxygen. A behavioral medicine specialist met with Jane and taught her relaxation techniques to use when her breathing was bothersome. With improvement in her shortness of breath, anxiety, and mood, Jane began to work with members of the palliative care team and her primary physician, as well as with representatives from social work and pastoral care, to clarify her overall goals and plans for the future.

Discussion:

Dyspnea is a commonly feared symptom in patients with advanced diseases affecting the lungs. Careful assessment, based on the patient’s subjective symptoms, and a thorough history and physical examination, guide management. Identifying and treating the underlying cause of the shortness of breath (pulmonary edema, bronchospasm, pleural effusion, etc.) generally provides the most effective relief. If treating the underlying cause is not possible or practical, efforts to manage the symptom itself are essential.

Oxygen, opioids, and benzodiazepines, as well as non-pharmacological interventions, represent the main strategies for controlling dyspnea. Opioids, often in lower doses than used for pain, reliably relieve dyspnea. All opioids are effective for managing dyspnea, though morphine is often used because of its low cost and ease of titration. Clinicians often fear respiratory depression when using opioids to control dyspnea, but they can be used safely and effectively when titrated carefully and followed closely. Sedation occurs well before respiratory depression and can signal a need for dose adjustment or more cautious titration.

Benzodiazepines can be safely added to opioid therapy to manage co-existing anxiety, starting at low doses and titrating to effect. Simple relaxation techniques can be easily mastered by patients and can provide a sense of control over distressing symptoms. Fresh air from an open window or fan can also provide significant relief. Patients and families should be reassured that dyspnea can be effectively controlled with the modalities discussed above.

References:

1. Luce J, Luce J. Management of dyspnea in patients with far-advanced lung disease: “Once I lose it, it’s kind of hard to catch it…” JAMA 2001: 185:1331- 1337. doi:10.1001/jama.285.10.1331

2. Emanuel L, von Gunten C, Ferris F. Education for Physicians on End-of-Life Care (EPEC) Module 10: Common Physical Symptoms. American Medical Association, Chicago: 1999.

*Historical Cases are presented intermittently to allow for twice monthly publication on the blog.
**Slight editorial changes were made for improved readability.

Music Therapy

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 24 Jun 2008 05:05:00 +0000

By Andrea Scheve, MM, NMT, MT-BC
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 4 - May 2008
(Original PDF)

Case:

Mrs. D. is a 55-year-old woman with a history of cardiomyopathy. She was placed on a Ventricular Assist Device (VAD) and awaited heart transplant in the hospital for over 50 days. She received the heart transplant and remained in the hospital for about a month post-transplant before moving to an outside facility. Her husband was her main support system in this time, and the Palliative Care Team was consulted for support as well. When asked by the Palliative Care doctors if she would like a visit from the music therapist, Mrs. D. enthusiastically responded “Yes!”

During our first Music Therapy session, Mrs. D. shared that she was a “Sweet Adeline” (a member of a barbershop quartet) and she sings the “Lead.” She led us all in singing every gospel tune we could come up with that day, and played percussion instruments as well. She even sang to staff as they came into the room. Singing is a great tool to use in music therapy because it requires deep breathing, and produces a relaxation response. It is also great for respiratory therapy, and the percussion playing is good for physical conditioning.

Shortly thereafter, I received a phone call from Mr. D., whom I had not yet met. I learned that they had received bad news Mrs. D. was beginning to reject her new heart. He requested I come at my earliest convenience to see Mrs. D., that she needed Music Therapy. When I arrived, I found the two sitting side by side on the hospital bed. I set up in front of them, and we began with requested gospel tunes.

At a time of crisis, people often look for spiritual support, and music is one way people can express their spirituality and feel comforted. Mr. D. began to cry. As the tears flowed down his face, he sang “I once was lost, but now am found, was blind, but now I see.” I once again played every spiritual song I know to support Mr. D through his grief and allow him to safely cry. As Hogan (1999) documented, “music therapy was often experienced spiritually, reaffirming participants’ acceptance of dying, or allowing them to think of life thereafter, awaken to life’s meaning and/or reflect on the fortunate experiences of having shared love and kindness.”

Using all live music in this context is important because the music can be altered to meet the expectations and needs of the patient/family; e.g. faster, slower, louder, softer, changing the instrumentation, and allowing the patient to be the leader or the follower, the director, the performer, or the audience. They are allowed as much choice and control over the situation as they need, because often times they have little choice or control over what is happening to their bodies or the disease process.

As we moved on to oldies, Mr. D. stopped crying and they both started talking about their early romantic days together, how they first met, their children, and grandchildren. The music evoked memories from long ago and facilitated a life review for the couple. They were able to recall memories connected to songs, their first dance, their wedding song, and favorite songs of their children.

Musical life reviews are a way for people to celebrate their lives, their love for each other, and their family traditions. Just as certain olfactory sensations can trigger memories and emotional reactions, auditory sensations (music) are linked to memories and emotions, making the life review process seamless in musical form. Mrs. D. was discharged to another facility a few days later, and I suspect she and Mr. D. continue to sing together, using music to add quality to their lives.

References:

1. Hilliard, R. (2005). Hospice and palliative care music therapy: a guide to program development and clinical care. Cherry Hill, NJ: Jeffrey Books.

2. Hogan, B. (1999). The experience of music therapy for terminally ill patients: A phenomenological research project. In R. R. Pratt & D. E. Grocke (Eds.) MusicMedicine 3: musicmedicine and music therapy: expanding horizons (pp. 242-254).

"Am I really going to have to live like this?": The Role of Octreotide in Patients with Persistent Nausea and Vomiting after Venting Gastrostomy

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 10 Jun 2008 13:00:00 +0000

By Gordon J. Wood, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 3 - April 2008
(Original PDF)

Case:

Ms BB is a 57 year old woman with fallopian tube cancer with multiple mesenteric and peritoneal metastases and a history of large and small bowel obstructions. She presented with nausea, vomiting, and abdominal distention. She was found to have another bowel obstruction and had an NG tube placed with improvement in her symptoms. She then went to the OR for an exploratory laparotomy. She was found to have massive carcinomatosis and ascites and it was felt that a debulking was not possible so a venting gastrostomy tube (g-tube) was placed and the operation was aborted.

Palliative care was consulted to assist with postoperative nausea and vomiting. Despite placement of the venting gtube, the patient had persistent nausea and held a basin next to her during the interview to catch her frequent episodes of emesis. She was despondent because the surgeons had told her that the g-tube was working well and draining large amounts of fluid but that it was unable to keep up. Antiemetics were not helpful. The patient thought that there was nothing left to do and that she would have to live the rest of her life with this level of discomfort. A trial of octreotide 0.1mg subcutaneously three times daily was initiated in addition to continued drainage by her venting gtube. She was also given around-the-clock intravenous haloperidol and PRN intravenous ondansetron. By the next day, her g-tube output had decreased and her nausea and vomiting had resolved. Her pain was controlled with a hydromorphone PCA. She was eventually able to be discharged home with plans to follow up with her outpatient oncologist to consider next steps. With her symptoms controlled, she was able to move past her initial distress and talk openly about her hopes for the future and how she wanted to spend the time she had left.

Discussion:

Malignant bowel obstruction can occur with any cancer but is most commonly associated with advanced ovarian cancer, where it occurs in up to 50% of patients. It generally indicates a poor prognosis and carries a heavy symptom burden predominated by nausea, vomiting and abdominal pain. Patients with carcinomatosis, like Ms BB, are generally not candidates for surgical correction of the obstruction or endoscopic stenting. Fortunately, medical management can be very effective. Abdominal pain is treated with opioids and nausea is treated with metoclopramide in partial obstructions and haloperidol in complete obstructions. Corticosteroids are also often used for help in symptom control and because there is some indication that they may promote resolution of the obstruction presumably by decreasing inflammation and promoting salt and water absorption. Gastrointestinal secretions can be controlled with anticholinergics (such as scopolamine) and/or somatostatin analogues (such as octreotide).

Two prospective, randomized controlled trials suggest octreotide is superior to scopolamine. Octreotide works by inhibiting the release of several gastrointestinal hormones thereby reducing secretions, slowing motility, increasing water and electrolyte absorption, and reducing bile and splanchnic blood flow. It is generally dosed 0.1-0.3mg subcutaneously TID. Some palliative care units will use continuous infusions at higher doses with anecdotal success.

Current guidelines suggest placing a venting g-tube if medical management is unsuccessful. A venting g-tube is similar to a traditional g-tube but is used solely for drainage of the gastrointestinal secretions and the liquids taken by mouth that are unable to bypass the obstruction. This drainage prevents the backup of these fluids that would normally stretch the viscus and stimulate vomiting. As experience with this intervention increases, many clinicians advocate g-tube placement early in the treatment algorithm because it can provide more complete relief of vomiting and allow more extensive pleasure feeding. Venting g-tubes can, however, place the patient at greater risk for electrolyte imbalances.

Most guidelines and many clinicians consider venting g-tube placement and medical management with octreotide/ anticholinergics as two separate treatment pathways. This case highlights the fact that, occasionally, both may be needed simultaneously. Although Ms BB’s venting g-tube was draining effectively, she still experienced severe nausea and vomiting, and it was not until octreotide was added to the regimen that her symptoms became controlled. This scenario is borne out in some of the data regarding venting g-tubes.

In one series of patients with gynecological malignancy and upper intestinal obstruction, 4 in 31 had incomplete resolution of their symptoms with placement of a venting g-tube alone. All 4 had complete symptom relief when octreotide was added to the regimen. Clinicians need to be aware that venting gastrostomy tubes and medical management with octreotide/anticholinergics are not mutually exclusive treatment algorithms and a small percentage of patients will require both for adequate symptom control. Fortunately, as was the case with Ms BB, this approach can allow almost all patients with malignant bowel obstruction to regain some measure of comfort.

References:

1. Ripamonti CI, Easson AM, Gerdes H. Management of malignant bowel obstruction. Eur J Cancer (2008). doi:10.1016/j.ejca.2008.02.028

2. Campagnutta E et al. Palliative treatment of upper intestinal obstruction by gynecological malignancy: the usefulness of percutaneous endoscopic gastrostomy. Gynecologic Oncology. 1996;62:103-105. doi:10.1006/gyno.1996.0197

3. Ripamonti CI et al. Clinical-practice recommendations for the management of bowel obstruction in patients with endstage cancer. Support Care Cancer. 2001; 9:223-233. doi:10.1007/s005200000198

Denying the Obvious: How to Approach Patients Who Delay Medical Care for Advanced Breast Cancer

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 27 May 2008 02:26:00 +0000

By Winifred G. Teuteberg, MD

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 2 - March 2008
(Original PDF)

Case:
MM is a 77-year-old woman who presented to the emergency department with flu-like symptoms. On exam she had a large palpable mass in her left breast. A CT scan revealed a 10cm left breast mass and liver and lung metastases. After admission to the hospital, the breast mass was biopsied. The consulting oncologist met with MM and told her that she most certainly had metastatic breast cancer, although the biopsy results were not yet available. The primary service asked palliative care to see MM because of her advanced disease. There was also concern that she did not understand her diagnosis.

I came into the patient’s room and introduced myself, saying, “I see many of the breast cancer patients on this floor.” The patient stopped me, saying, “I don’t have cancer.” I apologized and asked if I might sit down and talk with her. I asked her to explain what she understood of her illness. She said she had fallen several months before and bruised her left breast. It had been sore ever since but she was otherwise fine until she developed “flu” and came to the emergency department. She understood that a scan showed “something in my liver,” but believed that without the biopsy she did not have cancer.

I explained that her doctors were concerned she had cancer. I then asked her what she was most worried about. She told me that her husband died from lung cancer the year before after a two-year battle with the disease. She said, “I’m afraid I’ll suffer the way he did with chemotherapy and radiation and die anyway.” I counseled her that some patients with metastatic breast cancer choose to focus on comfort, rather than pursue aggressive therapies that may not help them achieve more quality time. She was relieved to hear that this was possible. She was discharged with a plan to discuss treatment options with her oncologist but was also considering referral to hospice.

Discussion:

A large part of my clinical practice involves providing inpatient palliative care consults to breast cancer patients. During my three years of practice in this setting, I frequently encounter women presenting with palpable, often fungating, breast masses. In nearly all of these cases patients sought medical attention for a symptom not obviously related to the mass or at the request of a concerned friend or family member. Even after being told their diagnosis, patients often did not accept it and continued to believe their symptoms were related to something else. They can continue in this belief for months and sometimes years. When other health care providers encounter these patients, they are struck by the magnitude of their denial.

Upon review of the literature, denial of obvious breast cancer and delay in presentation for medical care is quite common. Approximately one third of patients present for evaluation more than 12 weeks after developing symptoms and about 5% present more than a year after noticeable symptoms. Most of these patients present with locally advanced or metastatic disease. Studies identify several reasons for this delay, most of them related to the patients’ initial psychological response to their symptoms. Patients who delayed presentation were more likely to have significant fear of cancer itself and/or therapies for cancer including disfiguring surgery. Many patients noticed a lump but believed that the lump would go away or attributed it to another cause. Others did not know that breast cancer is a potentially curable illness and fatalistically did not seek treatment because they believed they were going to die no matter what they did. In several studies patients reported that they knew the symptom was serious, but were too busy caring for others such as young children or sick family members to take time to seek medical advice.

Interestingly, although some studies found a small increased incidence of psychiatric illness in patients who delayed presentation, studies found no significant differences in psychological well-being between patients with early versus late presentation.

When caring for such patients, it is important to realize that their reasons for delaying presentation or even acknowledging their illness are significant for them. Rather than initially attempting to change their beliefs and force them to accept their diagnosis, it is best to first explore their fears and identify ways to help allay these fears. In the case of MM, her fear was that she would suffer the way her husband did and die anyway. Although I was not able to cure her cancer, I was able to provide comfort by offering her a way to avoid the suffering that her husband endured.

References:

1. Phelan M, Dobbs J, David AS. ‘I thought it would go away’: patient denial in breast cancer. J R Soc Med 1992;85;206-207. Full PDF

2. Mohamed IE, Williams KS, Tamburrino MB, et al. Understanding locally advanced breast cancer: What influences a woman’s decision to delay treatment? Preventive Medicine 2005;41:399-405. 10.1016/j.ypmed.2004.12.012 [doi]

3. Burgess CC, Potts HWW, Hamed H, et al. Why do older women delay presentation with breast cancer symptoms? Psycho-Oncology 2006;15:962-968. 10.1002/pon.1030 [doi]

What Is That Guy Thinking? When the Attending Is the Person Who Needs the Intervention.

ctsinclair@gmail.com (Christian Sinclair, MD) — Tue, 13 May 2008 03:52:00 +0000

By Elizabeth Chaitin, MSW, MA, DHCE

Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center

Vol 8, No. 1 - February 2008
(Original PDF)

Case:

Mr. James Martin is 74-year-old man admitted to an outside hospital with a two-month history of shortness of breath, edema, and recent difficulty ambulating. He has a history of an aortic aneurysm, hypertension, cellulitis of his lower extremities, chronic obstructive pulmonary disease from years of heavy smoking, as well as ischemic cardiomyopathy and congestive heart failure. Mr. Martin had worsening renal functioning upon admission and was found to have two masses, one on each adrenal gland. He was scheduled for surgery and an ethics consult was called because the patient “didn’t seem mentally right.” The ethics consultant interviewed the patient and family and discovered that Mr. Martin was “mentally slow” and was illiterate. He never attended school and was raised and cared for by family until his adult years when he rented a small apartment near his sister Debbie with whom he is quite close. The consultant recommended that his sister sign for consent for the surgery for she felt Mr. Martin was neither able to comprehend the severe nature of his current condition nor could he comprehend the risks undertaken with the recommended surgery. The sister consented to bilateral adrenalectomies.

In the weeks following this surgery, the patient seemed to continue to decline, and his sister expressed concern that “James was suffering.” Six weeks after surgery the consultant believed that the patient was dying and spoke with the attending physician who responded, “don’t throw in the towel yet” and recommended feeding tube placement in the hope that the patient would improve over time.

The ethics consultant requested a palliative care consult for the purposes of gaining perspective on prognosis. Both the palliative care physician and CRNP felt the patient was, in fact, actively dying, and recommendations were made for his comfort. Rather than taking a hard stand, over the next week, the team regularly communicated with the attending service, and eventually the focus of care changed to comfort measures only. Mr. Martin was discharged to an in-patient hospice close to his sister and died four days after discharge.

Discussion:

In this case there were two different stories or viewpoints present, which could have been conflictual in nature depending on the approach taken by the Palliative Care and Ethics Team. In Story One, the attending believed strongly that it was possible the patient could “get well” with more time and encouraged the family to consider the placement of a feeding tube. In Story Two, the Palliative Care and Ethics Team was certain that the patient was dying and believed that the placement of a feeding tube would not add to the longevity or quality of the patient’s life.

The approach the Palliative Care and Ethics Team chose was to focus their discussion on acknowledging the attending’s viewpoint and clearly communicating their understanding of his dedication to his patient, rather than choosing to register their disagreement with his viewpoint. As a result emotions did not get in the way of the communication between the two parties (Fisher, Ury & Patton 1991). The team assumed that the attending had good intentions toward his patient. Their goal was not to convince the attending he was mistaken in his viewpoint but more to suggest a reevaluation from their perspective. It was the ability of the attending to consider both viewpoints, which allowed him to re-evaluate his perspective regarding the patient’s ultimate prognosis (Stone, Patton & Heen, 1999).

The approach taken by the Palliative Care and Ethics Team was not one of confrontation, but more one of soft negotiation through which the attending could be free to see and accept a different perspective without any loss of self-esteem or pride. Stone, Patton and Heen describe such an approach as working through different conversations in an effort to see what is at the basis of apparent conflict or disagreement. This perspective moves one toward understanding of different perspectives and their associated emotions. In addition, they note, “this approach will help you become more aware of the process of communication and gain insight into what’s making your conversations difficult” (Stone, Patton and Heen, 1999).

References

1. Douglas Stone, Bruce Patton and Sheila Heen. “Difficult Conversations: How to Discuss What Matters Most.” Penguin Books, 1999.
2. Roger Fisher, William Ury and Bruce Patton. Getting to Yes: Negotiating Agreement Without Giving In.” Penguin Books, 1991. (Wikipedia Link)

(Edit: (6/16) Added missing fragment "...consultant believed that the patient was dying and spoke with...)