Midwife for the End-of-Life

Pet Hospice

2012-08-29T22:00:00.000-07:00

I have had to put two of my cats to sleep during the course of the past 10 years. Both of these decisions were terribly difficult and painful. In one case, I felt I let my cat Orange Kitty live too long and she suffered too much. My heart still aches remembering her walking a few steps, collapsing and urinating all over herself. She was such a dignified cat. I can't imagine that was how she would have wanted to die. In the other case, I still sometimes worry that I put my cat Ebony to sleep too soon. He wasn't eating and was moving very slowly, especially attempting to lay down and get back up. The vet told me he was in renal failure and he would not take to having fluids infused subcutaneously, as my previous cat had. For fear he would progress to the condition that Orange Kitty had, I had him euthanized as soon as I knew he was terminal. There are now so many more resources available for people who are grappling with this painfully difficult decision.

I just came upon a great site today, Animal Hospice that offers a FAQ section to help you make this decision. To quote, "We suggest sitting with the ailing animal and be very quiet. From this place of quiet and peace, share with the animal that the illness or old age is irreversible and that you are open to hearing or feeling what the animal's wishes are about the future." What a beautiful idea. As someone who meditates regularly, this seems like excellent advice.

Nikki Hospice Foundation for Pets is another excellent resource. Their site includes links to products such as wheelchairs for dogs, animal incontinence products, and harnesses that people can use to help support an animal who has difficulty walking.

The International Association of Animal Hospice and Palliative Care is a membership-based organization that provides information to both animal parents and to professional providers about animal hospice.

And sadly, a final resource, In Home Pet Euthanasia offers a listing of providers throughout the United States and Canada who will perform pet euthanasia in the comfort of your own home. If like I did, you feel that is the best option for an ailing animal companion, this site may be able to provide you with a referral to a provider in your area.

May all of our beloved animal companions live long, healthy lives!

A Unique Tribute to a Loved One: Turn Them Into a Diamond

2011-02-05T09:31:00.000-08:00

I am in the process of planning my wedding. I haven't announced it here, as I didn't see its relevance to the topic of this blog. However while reading postings in a forum of a wedding community I participate in, I came across a post about turning a deceased loved one into a diamond. Literally! I'd never heard of this before, but was immediately curious to know more.

I'd heard of cremation jewelry that's made to hold the cremated remains of a loved one. But in this case, the cremated remains literally ARE the jewel in the jewelry. The cost makes it impractical at a minimum of $2490 (unless you purchase multiple gems which brings the price per gem down somewhat). But it's certainly a novel idea!

What do you think?

The Idea of "Death Panels"

2011-01-05T11:56:00.000-08:00

I am so grateful to Dr. Atul Gawande's piece here acknowledging that end of life discussions are hard and his admission that he failed Sarah, a 35 year old patient of his, and her family when he neglected to have this discussion with her before she died.

When I worked as a Palliative Care Clinical Nurse Specialist at a local hospital, I was hired to have end-of-life discussions with patients who were in an acute crisis in the hospital. These were incredibly difficult conversations.

Imagine being told that you are dying. That alone is profoundly painful news to take in. Then on top of it, to be told this news while you are in a crisis. I would assimilate that to my spouse asking for a divorce while I'm in the hospital rather than talking about it before then or after the crisis has resolved. And on top of it? Here I was, a total stranger to this person, giving them the news that they are dying. Imagine a total stranger telling you that your spouse is divorcing you. Wouldn't you rather hear that from your spouse? I have been seeing the same primary care doctor for over 10 years. Although I only see him in the context of medical problems, we have established a level of trust that cannot easily be replaced. I would *much* rather have him break bad news to me than someone who doesn't share the history that we have with one another.

I think this video does a wonderful job at explaining what these so called "death panel" conversations are really about and the challenges that must be overcome in order to have them.

A Green Death Maiden: Esmerelda Kent Advocates Green Burials and Shrouds

2010-11-15T21:53:00.000-08:00

Death is a deeply personal thing. Undoubtedly, it is often a heart-wrenching experience. Burial acts are rituals that provide closure to mourners, a final farewell to the deceased. Some cultures also treat burial as a way to help the deceased journey to the afterlife. The sensitive nature of dealing with death may explain why many conventional burial methods have remained largely unchanged for decades, despite growing evidence that these types of burials are environmentally damaging. Yet, as environmental issues grow in importance, more people are demanding eco-friendly funeral options. We found Esmerelda Kent, the founder of Kinkaraco, and spoke with her to learn more about how she provides grieving families a greener and more natural way to lay their loved ones to rest.

Green burials focus on delivering the body back to the earth in a natural state. This allows for the body to rapidly decompose without leaving behind any chemicals or remnants of things like non-biodegradable clothing or jewelry, lessening the burial's overall impact on the environment. In truly green burials, even the soil is carefully hand-shoveled and replaced in the order it came out of the ground so that the surrounding environment will remain undisturbed. These aspects of green burials, as well as personal experience in death, drew Esmerelda to the cause.

"I had always been fascinated by all things funereal and Six Feet Under was where I wanted to live," Esmerelda said in an e-mail, referring to a television series that focuses on the life of a funeral director. However, it was Esmerelda's personal experiences with death and funerals that truly opened her eyes to the idea of working in burials. In the 1980s, several of her friends died due to the AIDS epidemic, the Kinkaraco website stated, and Esmerelda rapidly became exposed to death and everything that came with it. Soon, she began to realize the value of helping others through the grieving process. Her own organic lifestyle and Tibetan Buddhist practice, which emphasized death and bodhichitta the desire to help others, fueled her foray into producing green burial shrouds through Kinkaraco and spreading the word about green burials.

Conventional burials are environmentally taxing. Every year, the 22,500 cemeteries across the nation bury approximately 90,272 tons of steel, 2,700 tons of copper and bronze, and more than 30 million board feet of hardwoods, all from caskets lowered into the ground. In addition, about 827,060 gallons of embalming fluid is put into the ground annually, according to the statistics posted by the Glendale Memorial Nature Preserve. There are additional environmental impacts from creating burial vaults as well. Fossil fuels consumed through cremation or by using a backhoe to dig graves also add to the list of negative environmental impacts. Many of these extravagant practices involved with conventional burials come from the idea of "eternal preservation," as well as from funeral corporations looking to make a buck, Esmerelda stated. “In fact, state laws concerning green burials are largely dictated by the funeral industry as opposed to actual legislature.”

"The cemeteries dictate what is and what is not allowed in the cemetery," Esmerelda said, "and funeral homes and cemeteries are heavily wined and dined as well as gobbled up by huge multinational corporations who tell them what is and what is not allowed." The bottom line is profit, she said, which typically comes from the sale of caskets, embalming services, and maintaining the perfectly manicured look of a cemetery. "The grass is even sprayed green and the amount of insecticide is staggering," she added.

On the other hand, burial shrouds and green burials are much less costly in terms of actual finances as well as environmental impact, which is one big reason why Esmerelda began making them. "I make shrouds locally because they are lightweight and easy to ship. They are beautiful, simple, biodegradable, and easy for funeral homes as well as families to wrap and use," she said. The shrouds even come with their own attached biodegradable lowering device, which eliminates the need for mechanical lowering machinery. "It is composting at its finest and most reverant," she said.

Green shrouds are made from natural silks, cotton, linens, and wools and provide an alternative to solid biodegradable coffins as well as conventional hardwood coffins. Families who desire to give their loved one a green burial can carefully prepare the body by washing it, stripping it of clothing and wrapping it either naked inside the burial shroud or clothing it in cotton garments before wrapping it with the shroud. Religious practices, such as prayers and hymns, are encouraged to help families through the process of body preparation. When it comes time to bury the loved one, a hole is carefully dug by hand and the deceased is placed within the hole before the earth is placed back on top of the body. Instead of a headstone, many green burials will plant a memorial tree instead. The emphasis is always on returning the body to the earth as naturally as possible while still allowing for a respectful grieving process.

"A tomato sealed in a metal box will always decompose because that is its nature. The nature of the organic human body is to decompose. Green burial helps it decompose rapidly, which is very 21st century as opposed to the 20th century promise of 'eternal presevervation,'" Esmerelda said. Yet, she admits that green burials may take some time before they catch on as a popular choice. "Lavish funerals, jazz funerals, and expensive, showy funerals are the culture and the tradition, and I believe that it will take at least one or two more generations for a green funeral to not be seen as something cheap, creepy, and disrespectful," she said. But that is something Esmerelda has accepted.

"I am not a fundamentalist," she said. "Green burial is not for everyone, nor is cremation or embalming. I just want natural, green burial to be available as a choice for secular people as well as for specific religions."

By-line:
This guest post is contributed by Kitty Holman, who writes on the topics of nursing schools. She welcomes your comments at her email Id: kitty.holman20@gmail.com.

On Being an Injured Hospice Case Manager

2010-09-29T06:35:00.001-07:00

I injured my back a few weeks ago and was told by Occupational Health that I should not be lifting more than 10 pounds until my injury heals. As nurses, we cannot work if we cannot lift or turn a 250 pound person. So... I have had to take time off work. This has been more difficult for me since I've been working as a Hospice Nurse Case Manager. When I worked on the floors in the hospital, I could always be assured that my patients would be seen even if I was out sick, because they weren't really even "my" patients to begin with. But as a Nurse Case Manager, I do, in fact, have my own patients. Of course, there are revisit nurses who see my patients when I am unable to. So I've been listening to my voicemail, even though I'm not technically working, and leaving voicemail messages with my supervisor to request visits for people based on what I'm hearing in my messages. But it's very difficult to feel so out of touch with the patients and families on my caseload.

I spoke to the company who is managing my disability payments while I am off of work. (It is so hard to even think of myself as "disabled," when I have a temporary injury to my back, but that's what they call me.) I asked about calling my patients while I'm off work and they essentially told me that would be in violation of my disability. I *want* to call my patients and their families, but then I'd need to chart those phone calls so the nurses following my patients would know what's going on. But then, ironically, I run the risk of not getting paid. *sigh* Something is wrong with a system that penalizes you for working to whatever extent you are able.

Fortunately, I go back to Occupational Health on Friday and expect they will release me to return to work. Cross your fingers for me!

Death Rattle 201

2010-04-25T10:08:00.000-07:00

While I was in nursing school, I wrote on this blog about death rattle. Family members responses to that post revealed a lack of reassurance provided from the explanation. And some nurses I worked with reported that the interventions typically suggested (turning and repositioning and anticholinergic medications) sometimes either had no effect or even made the sound worse. So... I decided to do my Master's thesis on the death rattle (often referred to as "excessive respiratory secretions" in the medical field). Here is a brief summary of my dissertation.

Death rattle occurs in 51% to 70% of patients within the last 48 to 57 hours of life (Lichter & Hunt, 1990; Morita, Tsunoda, Inoue & Chihara, 1998; Bausewein & Twycross, 1995; Power & Kearney, 1992).

Anticholinergic medications, which are typically used to treat death rattle, block the parasympathetic innervation of the salivary glands by inhibiting muscarinic actions of acetylcholine on autonomic effects innervated by post-ganglionic cholinergic neurons thus reducing the production of saliva (Hockstein, 2004; Springhouse, 2002). As the death rattle does not always respond to these interventions, Bennett conducted further research into this phenomenon and came up with the conclusion that there is more than one type of death rattle.

Physiological Theory: Causes of Death Rattle

Bennett (1996) identified two different types of death rattle. Type I is caused by an accumulation of salivary secretions when swallowing reflexes are inhibited and type II is caused by an accumulation of bronchial secretions in patients too weak to cough effectively (Bennett, 1996).

Salivary Secretions

Salivary glands have an average output of 1000 to 1500 mL per day (Marieb, 1998). Salivation with eating is controlled by the parasympathetic division of the autonomic nervous system and the facial (CNVII) and glossopharyngeal (CNIX) cranial nerves; however, the sympathetic nervous system causes continuous release of a thick mucin-rich saliva irrespective of digestion (Marieb, 1998). Both the parasympathetic and sympathetic nervous systems have nerve endings in the salivary glands (Zeppetella, 1999). The constriction of blood vessels serving the salivary glands inhibits the release of saliva through the sympathetic system. Dehydration also inhibits salivation because low blood volume results in reduced filtration pressure at the capillary beds of the salivary glands (Marieb, 1998). There is no evidence, however, that salivary secretion decreases nor continues at the same rate in the end of life.

Impaired Swallow and Cough Reflexes

Swallowing and coughing reflexes are regulated by the autonomic reflex enter of the medulla (Marieb, 1998). The involuntary component to swallowing (pharyngeal-esophageal phase) is controlled by the vagus nerve (Marieb, 1998). Although many research articles empirically support the theory that the coughing and swallowing reflexes cease at the end of life, physiological explanations for this phenomenon are as of yet unknown (Bennett, 1996, Ellershaw, et. al., 1995, MacLeod, 2002).

Current Management Guidelines

Current practice guidelines for the management of death rattle include repositioning the patient to mobilize the secretions, anticholinergics, suctioning and reassurance or education (Poor & Poirrier, 2001; Enck, 2002; Doyle, Hanks & MacDonald 1998; Hughes, Wilcock & Corcoran, 1996; Spruyt & Kausae, 1998; Dudgeon, 2001). Morphine and midazolam have also been suggested concomitantly with anticholinergics to increase sedation and prevent central nervous system excitement caused by anticholinergics (Enck, 2002; Doyle, Hanks & MacDonald, 1998); morphine may also improve the frequency of death rattle by decreasing the respiratory rate. No research has been completed to evaluate the effectiveness of repositioning, suctioning nor education as management strategies for the distress caused by death rattle.

Suctioning may not be an effective means of treating death rattle for multiple reasons. For one, the secretions are pooling farther in the hypopharynx or the bronchial tree than an oral or Yankauer suction can reach. Even when a nasal trumpet is used to suction farther back in the nasooropharynx, repeated suctioning causes local trauma to the mucous membranes. This leads to inflammation and swelling, which eventually complicates further suctioning. Death rattle secretions may need to be suctioned as frequently as every two hours. Based on my clinical observations, after as few as four or five episodes of suctioning, edema may occur and may occlude the airway, preventing further suctioning. Suctioning is also thought by some to be undignified for the patient and may cause the patient distress if the patient is alert or semi-conscious. Nevertheless, it is frequently advocated in literature (Poor & Poirrier, 2001; Enck, 2002; Doyle, Hanks & MacDonald 1998; Hughes, Wilcock & Corcoran, 1996; Spruyt & Kausae, 1998).

In practice, many palliative care units and hospices limit intravenous fluids. The rationale for this practice is that intravenous fluids are forcing fluids into the body that the body is unable to utilize. Dying patients frequently have decreased serum protein levels, which shifts the plasma’s osmotic pressure; this causes fluid to leak from the vasculature, causing edema (Guyton, 1996). These fluids may collect in the lungs, the ankles and the oropharynx.

Type II Death Rattle

When anticholinergics are used consistently, yet the death rattle continues, there may be another underlying cause. These cases have been referred to by Bennett (1996); Morita, Tsunoda, Inoue and Chihara (2000); and Wildiers and Menten (2002) as type II death rattle. In most cases, it is difficult to distinguish between the two types because scientific investigation is rarely indicated in the last days of life. However, some causes may be identified and thus treated appropriately.

Treatment Recommendations

Identify each dying patient’s particular risk factors for developing death rattle to assess whether type I or type II death rattle is most likely to occur.

Family members should be encouraged to report any audible sounds to their health care provider as soon as they notice it to ensure early intervention.

Consider prophylactically treating patients at increased risk for type I death rattle by repositioning the patient every two hours and by applying a scopolamine patch. Simultaneously, the frequency of mouth care must be increased to every one to two hours in order to maintain the integrity of the oral mucosa with the reduction of salivary secretions.

Risk factors include: prolonged dying phase

If scopolamine is ineffective in preventing the occurrence of type I death rattle, administer an additional anticholinergic around-the-clock for continuous coverage, such as atropine ophthalmic 1% 1 drop sublingually every 2 hours.

If the death rattle does not respond to the second anticholinergic, treat the patient empirically for possible type II death rattle causes (CHF, pneumonia, pulmonary tumor). If patient is known to have heart failure, treat with a diuretic. If the cause is suspicious for neurogenic pulmonary edema, treat with osmotic diuretics (i.e., mannitol), morphine (to decrease respirations), and/or corticosteroids (to reduce intracranial pressure). If the patient’s secretions are malodorous, suspect pneumonia and consider giving a single dose of Ceftriaxone. However, it should be noted that there are challenges in performing some of these interventions outside of a hospital setting.

Evidence has repeatedly suggested that death rattle is distressing to patients, family members and nursing staff and needs to be adequately managed in dying patients. Our goal is to provide for a “good,” peaceful, dignified death, one in which family members are assured of their loved ones’ comfort. Therefore it is imperative that we, as health care providers, address the treatment of death rattle.

Breaking My Anonymity

2009-06-23T02:02:00.000-07:00

Ever since I started this blog, I have been writing under the pseudonym "Mia Adams." My reasoning for this was based on my own personal experience of coming across one of my health care providers on-line and my fears that she would somehow reference me (even indirectly) in her posts. Not wanting to create that same fear in my patients, I decided to use a pseudonym.

As part of that, I opened up a separate email account for this blog. However, as you may have noticed, I have not been posting as frequently as I once was. And as a result, I have also not been checking that email account very often either.

Unfortunately, I am technically unable to change my email address for this blog (as both addresses are gmail accounts which conflict with the google-based applications for blogger). But I will at least unveil the woman behind the curtain, so to speak.

My real name is Melaina and my real email account is Melaina RN at gmail dot com. So please send any correspondence to that account if you would like to receive a timely response.

I have given a lot of thought to this blog recently and am considering picking it back up again. Of course, I am thinking of potential new directions to take it in. With the advent and increased popularity of video posts, I may explore that avenue. Though for the time being, revealing my real name seems public enough, I think. :-)

But I welcome your input as well. I have received so many wonderful and supportive comments on this blog, even during my own silences. Thank you so much for the feedback. I would like this to continue to be a space that enriches the lives of my readers as well as continues to stimulate me to explore new subjects and areas, especially pertaining to issues such as quality of life, palliative care, bioethics, hospice and the end-of-life. Please send any suggestions for topics or any questions that I have left unanswered. I'm hoping with a little attention, I can bring this blog back to life.

Thank you so much for reading!

Sincerely,
Melaina

Last 24 Hours Illustration

2008-09-22T18:10:00.000-07:00

Sorry for the long silence on this blog. I have been spending my time off-line drawing comics as a new creative outlet, which has taken up the time I used to spend writing this blog. Lately, I have been starting to draw illustrations pertaining to the end-of-life and I thought it would be appropriate to start posting these on this blog. Definitely a change of pace from this blog's former content.

The Great Cremation Ground

2007-12-14T11:01:00.000-08:00

One of my colleagues just came back from a trip to India and told me about a place called Manikarnika Ghat, also known as "The Great Cremation Ground."

According to Hindu mythology, being burned here provides an instant gateway to liberation from the cycle of births and rebirths. Karmic bonds are suppose to be burnt along with the body, which is how one is liberated from needing to be rebirthed. It is said that the funeral fires at the Manikarnika ghat have been burning for thousands of years. A constant stream of corpses come to this ghat to be burnt, day and night. According to my colleague, most corpses do not get enough time to burn properly and are often unceremoniously dumped, half burnt into the sacred river.

I have never traveled to India, but if I do, this certainly seems like an interesting place to check out.

Estimating Time of Death

2007-09-10T17:07:00.000-07:00

I am not in the practice of having to estimate time of death, as generally patients in the hospital are being watched routinely, and thus the time of death is already known. But I am on a list serv where someone posed a question that elicited this link. I thought the link was an interesting resource and might be useful to others, so I thought I'd post it here. This link is to a tool for estimating time of death, according to the Method of Henssge. It is based on temperature and puts into account various environmental factors including clothing. Check it out.

Your Truth: Dementia and Grief

2007-04-25T10:45:00.000-07:00

I apologize, once again, for my on-going silence on this blog. I've received a number of emails from readers encouraging me to post again. I appreciate the dedicated interest in this blog from my readers.

I recently attended a fascinating lecture on dementia and grief. Inspired by this lecture, I am going to pose a hypothetical scenario for your consideration. As per my standard format, after the scenario, I am going to ask some questions and will later post my response to the scenario.

Mrs. Horton is an 86 year old with middle stage dementia. She is no longer able to recognize family members nor dress herself. She is able to walk, using a walker, and frequently gets lost in the hallways of her nursing home.

Mrs. Horton's 61 year old son recently died of heart attack. Prior to his death, her son had come to visit her in the nursing home at least three times every week. Mrs. Horton was informed repeatedly of her son's death, but she does not have the short-term memory to retain this information. She asks where her son is multiple times every day.

1. Do you repeatedly inform Mrs. Horton that her son died, even though this news is distressing to her? Would telling her the truth be retraumatizing her or banging her over the head with the news?

2. Understanding that disclosing this news can be distressing to both Mrs. Horton and to the bearer of this news, what are some different ways you might respond to her repeated request for her son?

Thank You, Blue H News!

2007-01-22T00:38:00.000-08:00

blue-H-sign
Originally uploaded by miaadams.

I have been rather neglectful of this blog as of late. Despite my silence, I am delighted to report that Blue H News picked up one of my blog posts and published it in the January 2007 issue of their newspaper.

Thanks so much for the press, Blue H News!

Your Truth: Chemical vs. Physical Restraints

2006-10-04T04:06:00.000-07:00

Another hypothetical scenario for your consideration...

This patient is an 86 y.o. female with dementia who is actively dying. She has become delirius, but still has the strength to get out of bed and is at a high risk for falling and injuring herself from the fall. In addition, she has a intravenous (IV) line that is being used for pain medicine that she keeps trying to pull out. The doctor has suggested the use of sedating medications to keep her from pulling out her line and from falling. But the family states they would like to keep her alert and thus they refuse the medications offered. Instead, the family prefers that wrist restraints are applied, tying the patient to the bed rails to prevent falls and to prevent the IV from being pulled out. NOTE: Both types of restraints are avoided while the family is visiting, but the family leaves to sleep at night.

1. What education could be offered to the family to ensure they are fully informed of the options to ensuring this patient's safety?

2. What other options might be considered beyond pharmacological or physical restraints?

3. What are your own feelings about chemical verses physical restraints and how might these feelings impact your attitude towards this family's decisions?

Grief - the Written Word

2006-08-27T08:38:00.000-07:00

As I've mentioned before, JennyNYC and I have been working on a poetry project where we write a poem a day to one another. We are now up to about 115 poems. Though I haven't been keeping up to the every day pace the past week or so, I am still getting a lot out of the experience - both in expressing some of my more uncomfortable emotions creatively and in the inspiration that has come from reading Jenny's words. This is one of Jenny's more recent poems that she consented to letting me post on this blog.

Grief
by Jennifer

A mother comes in one day at the end of her rope.
Her two ten year old twin boys,
who I've been seeing for therapy
along with their mother,
are driving her nuts.
"Ever since their dad died
it's gotten worse and worse!" she explains.
"Their dad used to make all the rules
and make sure the boys followed them.
Now there are no rules,
and it's gotten out of hand.
They're nice boys
but I can't live this way."
The mother and I sit down and think up rules.
I tell her to stick with the basics,
both for rules and for consequences.
The boys join us in my office,
and we talk about how it is at home.
It turns out they don't like the chaos either.
Then I bring up the rules,
and after reading a few of them,
like, "No cursing,"
and "Brush your teeth before bed,"
the twin who is usually the unemotional, "tough" one, Sean,
throws himself onto the floor,
curls up into a ball,
and begins to sob.
It's late evening in the clinic,
and his lone, heartwrenching cry
fills the empty hallways,
as the three of us listen and look,
frozen witnesses,
shocked, worried, and awkward.
Sean's twin, Johnny, says, "C'mon, Sean,
these rules are easy," but Sean can't hear him,
lost in a painful moment.
Johnny muses aloud,
"He's crying more than he ever has
since Dad died."
Johnny and the twins' mother
slowly ease themselves to the floor beside Sean
and put their arms around him.
Knowing Sean's usual distaste for physical affection
I tense up, fearing that Sean will lash out at them.
But instead he allows his family to hold him
providing comfort and sharing in the painful knowledge
that his father is not coming back.

This is such a beautiful and moving poem. I can relate to this trigger for grief from my own personal experience with my divorce. I thought I'd worked through my grief, as my divorce happened over six months ago now and I've started dating and just generally feel much more centered and like myself again. But then my childhood best friend's grandmother died. She was a big part of my childhood. She was rather eccentric and being around her always put a smile on my face. Since my maternal grandmother died when I was young and my paternal grandmother lived in Florida (and was still living up a wild, youthful life), this friend's grandmother was much like a grandmother figure to me. But the trigger that came from her death had nothing to do with her really. I wrote and sent a condolance card to my childhood best friend. As I went to sign the card, I faltered. I hadn't signed a card since the divorce. For nine years, I had sent dozens and dozens of birthday cards, anniversary cards, graduation cards, and such - all signed with my name and my ex's. This was the first time I signed a card with my name alone. Alone. Solo. In moments like this, the last six months feel surreal, like a dream. How my life can change so drastically from the life I lived over the last nine years. I spent nearly a third of my lifetime with my ex. The things I am grieving are manifold. On top of the loss of the relationship and the family we had become, there is the loss of an identity - the loss of that "Me AND You" at the end of those cards.

Your Truth: "I Want to Drive Her Home."

2006-08-18T20:22:00.000-07:00

"Your Truth" is a series of posts I have written describing end-of-life scenarios. These scenarios are in some way controversial - either due to an ethical dilemma or a particular communication challenge. Please read the scenario and then offer your thoughts on what you might do in this circumstance. Although these scenarios are all based on real-life situations, they are fictionalized so as to protect the anonymity of the person(s) whom the scenario was inspired by.

In this next scenario, we have a 82 y.o. Russian female who had a stroke that left her non-responsive (she is unable to speak nor move and her gag and corneal reflexes are absent). She had end-stage renal disease prior to the stroke. She is still in the hospital. The doctors have given her a prognosis of days to weeks to live. Her family, per her written advanced directive wishes (rare to have these done, but sometimes we're lucky enough to know what the patient would want), has decided to stop dialysis and start her on hospice care. The family would like to take her home to die.

The family is afraid, however, that she will die during the ambulance ride home. They are strongly opposed to her dying in an ambulance and so they would like to drive her home in their minivan. Despite education regarding the perceived improved comforts that would come with the ambulance ride (bed, pain medicine, gurney ride into the home), the family remain committed to driving her home themselves.

Now keep in mind that the minivan is not equipped with a bed and the patient would have to be phycially lifted into the minivan. Due to hospital liability issues, the nursing supervisor reports no hospital staff may help her into the van and therefore the patient must be transported home by an ambulance.

What might you do? What are the potential positive and negative ramifications of either option?

The Death Penalty

2006-08-04T02:12:00.000-07:00

My blog is about death and dying, in general. But also as death has pertained to my own personal life. This has led this blog to focus largely on the issues of:

-ethics
-spirituality
-symptom management
-grief
-issues with facing mortality

...and more.

Today, I met a paralegal who works for an attorney defending prison inmates on death row. I am opposed to the death penalty, personally. I have been opposed to it primarily on the basis of its misuse - the fact that those whom are executed are disproportionately minorities.

Inspired by my conversation with this paralegal, I decided to check out what the death experience is like for these prisoners. Having read about the actual process of euthanasia (that's really what it is) used in these cases, I feel even more strongly opposed to the death penalty. I will attach the link here, but I caution you, the descriptions of methods of execution found here are profoundly disturbing.

Expired Poem

2006-07-31T15:50:00.000-07:00

JennyNYC and I have been working on a poetry project. We have been writing one another a poem every day for 100 days now. I think part of my silence on this blog has been due to this new creative writing outlet. But I thought I'd share the poem I wrote last night. It's not my best piece of writing, but the subject certainly seems pertinent to this blog.

"Don't leave me,"
he nearly begged
in fear
as he reached out his hand to me.
His frail body was failing him.
His wife at his bedside
spoke the feeling
they both shared.
"I was scared."
She says the words
with her back to me
as she walks away from the bedside.
I massage his feet
to calm his nerves
and he falls right to sleep.

Two nights later,
I return to work,
looking forward to seeing him again.
Having bonded over the
touch of his hand in mine.
Having felt a connection
in his need for my companionship.

As I walk onto the floor,
my heart sinks.
His room is vacant.
The note on the clipboard reads,
"Transfer/DC to:
expired."

Thank you, Advance for Nurses!

2006-07-25T03:15:00.000-07:00

Just a quick thank you to Terri Polick for including me in her recent article on nurse bloggers in Advance for Nurses.

from The Mystic Odes of Rumi via the 5th Season of Six Feet Under

2006-07-24T02:30:00.000-07:00

Our death is our wedding with eternity.
What is the secret? "God is One."
The sunlight splits when entering the windows of the house.
This multiplicity exists in the cluster of grapes;
It is not in the juice made from the grapes.
For he who is living in the Light of God,
The death of the carnal soul is a blessing.
Regarding him, say neither bad nor good,
For he is gone beyond the good and the bad.
Fix your eyes on God and do not talk about what is invisible,
So that he may place another look in your eyes.
It is in the vision of the physical eyes
That no invisible or secret thing exists.
But when the eye is turned toward the Light of God
What thing could remain hidden under such a Light?
Although all lights emanate from the Divine Light
Don't call all these lights "the Light of God";
It is the eternal light which is the Light of God,
The ephemeral light is an attribute of the body and the flesh.

...Oh God who gives the grace of vision!
The bird of vision is flying towards You with the wings of desire.

Symptomatology: Itching

2006-07-02T12:56:00.000-07:00

For a list of symptoms I have reviewed in previous posts, please go to this symptomatology of dying link.

The next symptom I will address is itching (also known as pruritis). There are a number of reasons people who are at the end of life may experience itching. Some of the most common causes include:

-side effect of opioids
-uremic itching secondary to kidney failure
-jaundice secondary to liver failure and/or biliary disease

If the itching is presumed to be from opioids, then switching to a different opioid may be effective.

Uremic itching is more difficult to treat. The exact physiology of the itching is as of yet poorly understood. Therefore treatment approaches may move forward through trial and error.

Some of the medications that may be trialed for uremic itching and for itching related to liver failure include topical products such as:
-hydrocortisone cream - this antiinflammatory is very mild. If it's not effective, stronger steroids such as betamethasone 0.10% 15 grams twice per day may be used. However keep in mind that the stronger steroid puts the skin integrity at higher risk of breakdown.
-Lidocaine ointment 5% which numbs the surface of the skin.
-Sarna lotion, which is Camphor 0.5% and Menthol 0.5%, cools and moisturizes the skin and may help with mild itching.

Some oral medications that may be trialed include:
-Atarax (25 to 100 mg four times per day) is an antihistamine used to treat anxiety as well as for itching. It is primarily used for itching due to allergic reactions, but may be helpful with other types of itching.
-Benadryl, like Atarax, is best for allergic itching, but may be trialed as a supplement to other modes of treating pruritis. Antihistamines also make you sleepy. Some patients may report some relief if they are able to sleep through the itching.
-Questran (aka cholestyramine) is prescribed specifically for itching related to liver failure. It binds to bile acids in the intestine. This prevents their absorption, and the cholestyramine/bile acid complexes are eliminated in the stool.
Ursodiol (300mg twice per day)is a bile acid used to dissolve gallstones. Because it dissolves gallstones, it is suggested that it may also help with itching, but the effect is minimal.
-Doxepin (25mg daily) is an antidepressant/anxiolytic medication that has been used for pruritis. One of the side effects of the medication is peripheral neuropathy, which may be why it's been tried for this use.

Small studies have suggestd acupuncture may be effective in treating uremic itching in patients with chronic renal failure. Whether or not this may extend to patients at the end of life has not been studied.

See this link for more information on over-the-counter products for itching.

Ethical Issues at the End of Life

2006-07-01T08:22:00.000-07:00

If you are a regular reader of my blog, then you likely know that I have a passion for ethical dilemmas. Perhaps you even participated in a debate on one of my Your Truth posts.

I was recently asked to give a lecture on Ethics at the End of Life. Although I am passionate about ethics, I'd never given a lecture on the subject before. Having recently graduated from my Master's program, I dutifully prepared Power Point slides on concepts such as autonomy and choice, advanced health care directives, medical futility, quality of life, double effect, the spectrum of hastening death, moral distress of nurses, and the four-box method.

I *love* to teach. And no matter what the subject is, I always maximize interactivity between myself and my audience. Personally, I learn best when I am awake and I have a suspicion this is true for others. ;-) Fortunately, ethics is a subject that easily lends itself towards a lively discussion.

I have been wading through my email inbox, now that I'm done with school. I apologize to those of you whose emails have been sitting unanswered. I'm doing my best to get through them now. During this sorting of emails, I came across a link to an on-line excerpt from William Colby's book, Unplugged, where he writes:

"When surveyed, the majority of us say that when our dying comes, we hope to be at home, free from pain, surrounded by loved ones, and not hooked up to machines. In the abstract, that's likely true. We also very much want to be hooked up to those machines right up to the very moment when the doctor is sure that those miraculous tools can't fix us. Trying to find that exact line is no easy business."

This thought seemed particularly relevant to my last blog post, as well as to the discussion / lecture I gave this past week.

In the 1970's, it was accepted practice that any and all interventions should and would be taken to prevent death no matter how extreme the intervention (Drought & Koenig, 2002 - no, I'm not old enough to be speaking from personal experience, so yes, I used a reference for this). But as technology has advanced, we have vast and ever-growing means of keeping people alive, even while their bodies are otherwise failing them. As a result, ethical considerations in making decisions about treatment have become increasingly complex. This was a point I stressed in my talk; William Colby speaks to this in his book as well. Although technology has advanced dramatically, we are still no better at predicting when death will come. In my post asking how you'd like to die, not one of you said that you wanted to die hooked up to machines in the ICU. Why or why not?

If given the choice - to be kept alive as long as possible, but then to die in the ICU connected to machines or to possibly die prematurely but die peacefully at home, which would you prefer?

Presence

2006-06-29T21:50:00.000-07:00

Before I walk into a patient's room, I take a moment to gather myself. I take a few deep breaths and center myself. I am very conscious not to bring any stressful or hectic energy with me into a dying patient's room.

Today, as I was meditating, I felt that same shift. I felt myself coming to my center. And it occurred to me: I'd never practiced this same "presence" for *myself* before - I've only done it for my dying patients. What if I practice "presence" in all of my interactions? Okay, well, that may be an unrealistic goal, but how lovely would that be? Being present for myself this evening was incredibly powerful.

The power of presence has been discussed and written about in all kinds of disciplines - from Buddhist teachings to nursing research (unfortunately, I cannot put my hands on the nursing articles I have in mind).

So often, new nurses shy away from dying patients, citing, "But I don't know what to say!" Being present and bringing compassionate energy into the room is far more effective and valuable than any words.

I have decided to spend some time focusing on my spiritual practice. Since my divorce with S, I've felt rather off-center. First there was the major adjustment to living alone for the first time in my life (aside from one month back in 1995). Then I got involved in a whirlwind of a romance that crashed and burned as abruptly and as passionately as it shined. The sorrow over that second relationship ending within four months of my divorce gave me a new-founded shyness about relationships, which is perhaps just what I needed to step away from dating altogether to really spend some time alone with myself. I went on a few more dates to try to give it another shot, but recognized almost immediately that I was not fully present to the experience of the dates. I was frantically going through the motions of the dates to escape being present with my grief. So now, here I sit with myself. And the grief is far more tolerable than I had feared. Oh, the waves crash down on me pretty hard at times. But they pass and I am not running away from them all of the time. It's much less tiring to just sit still and feel.

So what does this new spiritual practice look like?

Well, it's not all about meditating. Today, after work I went on a bike ride in the park. The weather was lovely. Being surrounded by trees always feeds my spirit, as does writing on this blog. Surfing can be a spiritual experience for me as well - surrendering to the waves, the awe of the vastness of the ocean, my powerlessness.

Thank you all for listening / reading and thank you for coming back after my long bouts of silence. Now that I'm done with my Master's degree, I suspect I will be posting more often, once again.

How Would You Like to Die?

2006-06-19T13:00:00.000-07:00

This question was asked on Jocelyn Ryder's Question of the Week email survey. The following answers were provided by her readers. Feel free to provide your own answer in the comments section of this post. If you are interested in joining Jocelyn's Question of the Week email list, please contact her directly at orangegrl13 at earthlink dot net.

---

Without getting too deep -- after *finishing* a big bowl of premium mint chocolate ice cream -- at peace, close to nature, and ready for a nice surprise.

---

O.K.

---

i can say for sure how i would NOT like to die: in a car crash, a fire, by drowning, war, gunshot, stabbing, poison, (unless it was gentle, but not many are), or any other violent or otherwise painful death. ABOVE ALL, i would NOT like to die alone.

i think the way to go for me would be surrounded by loved ones, in a cabin, maybe, near a lake, a gentle cool breeze blowing through the window, rustling the flowers that are everywhere in the room, cat at the foot of the bed, dog nestled in my arm, my lover, my wife, by my side, holding my hand telling me she'll see me soon, that it's going to be alright, stroking my hair the way my mom used to do when i was a boy. and with the swell of love in my heart that would last the rest of her life, and a deep sleepy sigh of the dog, i'm gone.

i'd want to know too that after i go there would be a celebration, a party; and that all of our friends and family was there to say good bye in a really good way, to have fun with the life they still have, and love each other, if not for themselves, then at least for the day, to honor me.

i'd also like to be remembered. interesting. i get a pang of feeling like that would be asking too much for some reason. i don't really think it's asking too much.

---

I wouldn't like to die.

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I would like to die peacefully. But only after achieving my goal of establishing my rescue/sanctuary so that it lives in perpetuity and to get laws established that would make animal cruelty a felony with a mandatory 10 years imprisonment and a mandatory $10,000 fine.

---

the thought of death is so scary to me that i have panic attacks about it; most recent thought and attack was yesterday

but if i must die, i would like to go in my sleep

---

peacefully while I'm dreaming. Hopefully after a life well-lived, and after I feel ready to go.

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I would like to die in my sleep ... but would like to be very aware that I might "go" at any time and to have accepted that fate ... so I could still say my 'goodbyes.'

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Unexpectedly.

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When I was younger, I always wanted to die by getting hit by lightening. I thought it would be such a great, dramatic end to a drama-filled life. Then my ex's uncle got hit by lightening and became a vegetable and I changed my mind - what if the lightening didn't do the job and I, too, ended up a vegetable? That would just bite. Now I'd prefer a slower death - like cancer. Something with a relatively predictable course, so I'd have time to say goodbye to loved ones. Preferrably not too drawn out, as I've always hated lingering goodbyes. So maybe metastatic cancer or pancreatic cancer (if the pain was well-managed). In terms of the other end of the hows - I'd like to be surrounded by loved ones and comfortable (pain, nausea, anxiety all well-managed). Oh! And I'd like to get daily massages for at least the last week of my life.

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In my sleep at the same time as my husband.

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Sober, and without pain (prolonged or otherwise).

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Peacefully in my sleep. No dramatic exits for me! The most important thing is that its painless. I'm not afraid of death, only pain.

---

so trippy that you are asking that right now...i have
started reading the tibetan book of living and dying
because of some deep inner sense that was telling me
that i really wanted to learn HOW to die...don't know
why exactly that desire to learn about dying came up
in me, just trusted it...i am learning that death is a
process, that we can prepare for death by learning how
to live...learning how to live in our deep essential,
eternal self....through meditation, through remaining
calm through all the manifestations of mind....through
what the author calls 'calm abiding'...love that
term....calm abiding....not easy....such a worthwhile,
beautiful practice....so, i would like to die
calmly...really rooted in the light, in the truth of
who i am...deeply connected to my god self...i would
like to be very old and very content with what i have
done with my time on earth....i would like to be lying
in my warm, cozy bed in my home surrounded by family,
partner, children, grandchildren, animals....looking
out over the calm lake and beautiful lush green trees
and mountains that have nourished me so deeply...i
would like to breathe in, breathe out, breathe in,
breathe out, gently, with so much love and so much
gratitude and peace...transition softly, gracefully,
peacefully...that is what i would like....

---

In my sleep!

---

Not sure. I just don't want to be alone.

---

without regrets

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Quietly (but not in my sleep – I want to know when I’m dying) at a very old age. Maybe I hear my great grandchildren running around downstairs. Maybe it’s very quiet, either way (selfishly) I want my partner by my side, holding my hand... Of course that means I won’t be there for him and that makes me sad... However I go I want to be satisfied. I don’t want to taint the experience with regrets...

---

something i never think about.

how i don't want to die: as the result of a street crime.

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With as little pain and as much of my faculties as possible after a long life.
In my sleep and old is the answer I think.

---

i will
but
I won't

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I would like to die admired, well respected, and in my sleep.

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After a long life. With people I care about at my
side. Having done most of the things I want to try
while on this planet. Having loved much. Having made
soome kind of a difference. Having seen my kids
enjoying their lives and hopefully my grandkids too.
The thought of being seperated from my kids is very,
very hard-this is the hardest thing to accept about
death-that I can't be with them once I fly out of this
body. But more than anything, I want them to outlive
me.

---

"Settin' " on the front porch in my rocking chair, holding hands with my elderly husband, and just nodding off.

---

In my sleep, after going to a party where I saw
everyone I loved.

---

Fly off in a little prop plane, two or three of us, and disappear--never be heard from again; no wreckage, or any other trace. Amelia Earhart style. Of course, this scenario also includes me being known by more people than just family and friends. I'd love to contribute to celebrity mystery deaths, like Rudolph Diesel going missing on a cruise across the English Channel, or Mallory vanishing on the slopes of Mt. Everest in the '20s. (They found him about two years ago--spoils the whole saga.)

That's just the PR aspect of dying, though--how I'd like it to look to the outside world. As far as what it would be like here inside my body...I guess I'll take the sudden heart attack. I'm out walking one fine day, and I slump over, and that's it. It might be nice to have time to say long good-byes to friends, but that means lying in a hospital bed with morphine racing through my veins. Not too wild about that.

---

And Jocelyn's answer...

Successfully defending a woman from being raped or attacked on the street. Preventing a child from being hurt or molested.

Or: laughing.

Off Days

2006-05-13T10:22:00.000-07:00

Sorry I haven't written the update to the last ethical scenario yet. In the scenario JP described, she states that the patient chose to stop dialysis of her own accord the following day and died within the next two days. This was over a weekend, so she was not able to assess how the family handled their mother's decision.

I will write more on decision making and family dynamics in a future post. You all had excellent thoughts on the situation. Thank you, as always, for your contributions to the dialogue.

I have had a few "off days" lately. It's hard for me to accept myself having an "off day." I'm suppose to be "on" and my best at all times. How did I know I was having an off day? Well, often I don't recognize them - especially their degree of "off-ness" until after the fact. I knew I was having an off day because I was finding myself particularly challenged by two anxious families. Normally anxious patients and even anxious families are a welcome challenge for me. But last week I was really struggling to find the patience to work with these particular families. I'm back working with one of these families again today. And here is how I see the measure of just how "off" I was. Today, I have one of these same families again. But this morning, I immediately reconnected with my sense of compassion.

In opening up my heart and mind and entering the patient's room with a fresh approach, the patient reciprocated and presented new information to me. Her son who has been so anxious will have no living family members once she dies, except for his wife. And his wife had a stroke five years ago - at the age of 46 - and has been in a non-responsive ever since. This new information certainly gives me perspective and a new appreciation for her son's anxious behaviors towards me. I am quite fond of the patient.

But as usual, I must also have compassion for myself. I can give myself permission to have "off days" now and then.

Your Truth: Decision Making Power

2006-04-26T11:25:00.000-07:00

The following ethical scenario was proposed by reader JP.

As is custom, please read the scenario, share your thoughts or recommendations in the comments section and in a few days I will post a follow-up detailing the actual outcome in a related scenario.

Ms. Baker is a 84 year old woman with end-stage renal disease. She has been dependent on dialysis for the past ten years. She is currently in the hospital in the intensive care unit for sepsis (a bacterial infection in her blood). She also has a number of other co-morbidities including COPD (chronic obstructive pulmonary disease) and coronary artery disease.

When you walk into the room, the dialysis nurse pulls up to the bedside with the dialysis machine. As it appears, Ms. Baker tells you, "I am so miserable. It is so unfair that I have been so sick. Do you know the meaning of misery?"

The notes in her chart say that the family and the patient have decided on a DNR (do not resucitate) code status and have been made aware of her poor prognosis. You notice on the monitor that Ms. Baker's blood pressure is only 84/43. This is a very low pressure and the dialysis will likely drop it lower.

As the health care provider, you accept the responsibility for ensuring Ms. Baker is aware of her options. Accordingly, you say, "Ms. Baker, you can refuse dialysis at any time. It's actually a very peaceful way to go. You just fall asleep and don't wake up again."

Ms. Baker looks contemplative and asks, "Is that so?"

You assure her it is.

Ms. Baker looks thoughtful for a moment more. "Well, I want dialysis today."

When you leave the bedside, you search out the patient's children. When you find them, you explain to them the converation you had with the patient and why - she seemed miserable; her prognosis (as they know) is very poor and she should understand what her options are. The family is very angry that you have had this conversation with their mother and go so far as to tell you never to visit the patient again.

Some questions for your consideration:

1. Should patients be informed of their options?
2. Should families have the right to withold information from a patient?
3. How might you handle this situation from here?