Pallimed: A Hospice and Palliative Medicine Blog

Hospice Nurses Are So Important

2012-05-10T23:16:00.000-05:00

Me with Ruth Hancock out side of KBR*

As many of you in health care are probably familiar, this week is National Nurse's Week capped by National Nurse's Day on Saturday May 12th, the birthday of Florence Nightingale. Most health care organizations do small things to recognize the important role nurses fill, but after this week it goes back to the regular grind.

Since completing a hospice and palliative medicine fellowship, I have been privileged to work alongside fantastic nurses who have been wonderful teachers, mentors, clinicians, and leaders. I am especially reminded because in the past two weeks I have had several interactions with nurses from my past education and work experiences. These chance meetings reinforced how indebted I am to the many hospice nurses who have helped form my approach to patients and families.

I was the sole fellow at the Hospice and Palliative CareCenter in Winston-Salem NC in 2003-4. Dr. Dick Stephenson was a exemplary fellowship director, but there was not the luxury of numerous physician faculty many programs have today, so there was a lot of on-the-job training. I loved this experience and would not trade it for anything. By default, my key teachers were the people I worked with every day. The hospice nurses at the Kate B. Reynolds hospice house, in IDG and traveling around central North Carolina to patients homes were the most experienced and available clinicians. I could ask them so many questions about patient and family communication, medication side effects, wound

As I began to get back into my Pallimed blogging mode, I will work the rest of the year to find more nursing related research, news articles and leadership stories. Also in a small token of recognition I am making a $100 donation to the Hospice and Palliative Nurses Foundation in honor of National Nurse's Week and I would encourage any other doctors who read this to do the same. I know I am not the only doctor who has been influenced by great hospice and palliative nurses.**

So thank you to Ruth, Becky, Elaine, Tiffany, Sally, Maria, Pat, Michelle, Janet, Melissa, Sue, Karen, Jennifer and many other hospice and palliative nurses who have taught me so many useful things over the years, and have been willing to listen to me spout off about ABHR gel and other esoteric topics. I am a better physician and a better person because I have worked with all of you.

If you are interested in hospice and palliative nursing, please check out the HPNA page on career options.

*No, the photo has not been Instagram'd, it was scanned from a time when I did not have a digital camera!
**If you email me that you have donated any amount I will update this post to show others how many doctors have participated. You can choose to have Anon, First name only or full name recognition.

Fellowship Match: Geriatrics in, Palliative Medicine up Next?

2012-05-04T01:17:00.002-05:00

[Ed. note: This post is a reimagining of a post at Geripal. Same facts - some simliar sentences - wholly different approach.]

This week the American Geriatric Society is holding their annual meeting and they announced they will now do a fellowship match starting with the 2014 academic year. This is huge news for geriatrics since they have been without a match since they were first officially recognized by the ACGME in 1988. It also serves as an important benchmark for palliative medicine fellowships.

Why is this important news? Both fellowships have a lot in common and hopefully directors at geriatrics programs can work with their HPM colleagues to accelerate working through the complexities of getting a HPM match. We have seen posts on GeriPal and Pallimed about the frustrations caused by not having a match.

With Geriatrics now having a match, hopefully our field will be inspired to do the same in a rapid manner. This should be easier because we have gotten past the toddler years as a subspecialty. Can you believe it was only 6 short years since ACGME officially recognized HPM? We now have over 70 HPM fellowships and a few score that have been existence under voluntary guidelines for more than a decade.

The match offers many benefits to future fellows: more opportunity to see other programs besides their home program, and more clarity on the timelines on when programs will take applications, interview, and make offers. With all these benefits it is surprising to me that out of nearly 150 recognized specialties only 50 or so participate in a match. Thankfully our field is marching towards a match, but it is not as easy as one might think.

I have been in discussions at meetings with over 40 fellowship directors in the room who are all desiring great candidates in a fairly small pool. When the match comes up, the tension in the room can rival a challenging family meeting when you start talking about what dates work, and how soon to implement a program. One thing nearly everyone agreed on is the importance of a match for fairness to programs and applicants. The challenge is more in taking a good idea and making it reality.
If you may not understand why this is important, I again encourage you to read Brian McMichael’s post on what it is like to be an applicant in the current system:

“My [application] process was cut short by a spoils-to-the-swift ethic. Because of the asynchronous timelines, I had to decline interview offers from programs I was very interested in. Given the inherent power disparity in the roles and the dynamics involved, I did not believe I had the latitude to walk away from offers from great programs in order to "explore my options" further. Perhaps my issue, but I doubt mine alone."

It is sad that this is the first impression that we give applicants coming to the field. I am happy that Geriatrics has accomplished this and that we now realize we do not have to wait 24 years for palliative medicine to do the same. We will do better.

[Ed. note: I appreciate what GeriPal and Eric Widera have accomplished and their ongoing contributions to the field. I enjoy working with him and the writers at Geripal. These words represent no one but myself. This is not a war between us, so please don't make it out as such. This is more of a creative writing exercise because after reading his post I felt insulted. Not as a board member, or as a blogger, but as a member of this field. We have studious people accomplishing great things in palliative medicine and hospice organizations. We are not perfect and it is good to encourage us to do better, but language matters. Our work makes this clear. - Christian Sinclair]

Blogs to Boards: Question 8

2012-05-01T23:47:00.001-05:00

This is the fourth in a series of 41 posts from both GeriPal and Pallimed to get our physician readers ready for the hospice and palliative medicine boards. Every week GeriPal and Pallimed will alternate publishing a new question, as well as a discussion of possible answers to the question (click here for the full list of questions).

Mr. Smith is a 72 year old patient was admitted to hospital from his nursing home for respiratory distress due to CHF exacerbation. Despite aggressive diuresis attempts, his respiratory distress continued and his urine output remained minimal (~30ml/day).

PMH: heart failure, moderate dementia, renal insufficiency

Home medications: furosemide 40mg po bid, metoprolol 25mg bid, donepezil 10mg daily, olanzapine 5mg qhs.

After a conversation with his son (health care proxy) the patient was "made CMO" (comfort measures only) by the hospitalist service and resident team two days ago. He was then started on a morphine drip “titrate by 1mg as needed for pain or shortness of breath”, his donepezil, olanzapine and diuretics continued, other medications stopped.

His intern calls in a panic: “We promised to make him comfortable, that he would die in 2 days, but he is still alive and the family does not know why he is in such pain – even with light touch – crying out & jerking.”

What is your recommendation?

a) Stop morphine drip and start fentanyl and lorazepam prn

b) Increase morphine and olanzapine

c) Increase morphine and add lorazepam prn

d) Stop morphine drip and start fentanyl, increase olanzapine

Discussion:

What is the right age for kids to go to a funeral?

2012-05-01T23:32:00.000-05:00

If you have worked in hospice for a few weeks or health care for a few years you will probably come across this question at some point. What is the right age to take children* to a funeral? This question is asked of everyone involved with the care of the patient not just the social worker or chaplain who you might think are natural targets for such a question. Deeper underneath this question are ones that children may naturally have about illness, death and dying. And of course these may be questions the parent do not feel ready to answer, thus the solicitation of guidance.

You can break down the basic answers in a couple of categories that all have their pros and cons.

No. Absolutely no! - Obviously this answer doesn't take into account any of the unique aspects noted below that may influence the decision. This response often comes from the feeling that protecting children form the sadder, darker sides of life is the best thing to do. But this may come at a price later, when the child grows up and really has a less nuanced and full understanding of how death fits with life. Finding the teachable moment as a parent is one of the trickiest skills to master.
Yes. Absolutely yes! - Well if absolute one way isn't so smart, absolute in the other direction must be brilliant. (Only in politics, am I right?) Sadly an always yes statement falls into a similar trap of missing the unique identifiers which guide the most beneficial path. Forcing children to learn about something can backfire if they are not prepared.
How mature is the child? - Well if you cannot answer the question with an answer, then try a question. I have heard this often and used it occasionally. Assessing for a child's maturity and more importantly understanding of the concept of death is not the simplest task. Sometimes my 6 year old is very mature, often times she is not. The inherently relative nature of the question may not always be helpful.
Was the child close to the person? - Closeness to the deceased may or may not be a great indicator of readiness to attend a funeral. But if the child is cl
What does the child want to do? This is the BEST RESPONSE IN MY OPINION. It empowers the child to have a say in this very important family event. From this you can get a sense if the kid feels obligated, indifferent, overwhelmed from the entire situation. In fact with death and dying discussions with children (and even adults) the best advice I was ever given was to ask what questions they have and answer them simply and leave room for more questions and discussion. Do not try and be an expert and explain everything to a child. They will let you know where they want to go with the conversation if you let them.

Other considerations:

Plan for a separate viewing and/or ceremony for children - If you are not sure how the child may react many funeral homes can work with you and have a smaller viewing or plan a ceremony to honor the loved one. This way the child is included but does not have to be subjected to the pressure of a larger group and the Aunt who just never has the right thing to say.
Access your hospice experts - Even if you have not had services provided by a hospice agency, you can usually reach out to one of the bigger ones in your community and ask to talk to a bereavement counselor and possibly a child-teen specialist. They have a great knowledge base and can connect families with resources in their community which focus on grief and loss challenges of kids and their families. Comfort Zone Camp is a great example that runs multiple camps nationwide.

Kansas City Star Mom2Mom poll

What got me thinking about this post was two things. First, my 6 year old twins have known for a while that daddy works at hospice and helps people who may die. They ask about graveyards and what happens to people in the ground there. They have not yet had a chance to attend a funeral, but it is something I have thought about how I would answer personally. And this morning I was pleased to see this question in my local Kansas City Star paper. The polled mothers from their Mom2Mom micro-site. about their thoughts and I was pleased to see this subject as part of the local Kansas City Star newspaper poll to mothers. As always the comments illuminate the discussion. Some excerpts:

I've tried to teach my kids (even when I can tell they don't want to hear it) that everything living will die someday. Death is part of life ("Circle of life, Simba"). That discussion is wasted if they're too young to comprehend.

I was 8 when I went to my first funeral and it was my father's and it was very uncofortable/terrible experience for me. Still to this day I remember the image of my fathers's body in the casket and the memory of seeing my father like that haunted me!

Are there any tips you might share?

*I use the term broadly here to even reach to young adult.

References:

Black, D. (1998). Coping with loss: Bereavement in childhood BMJ, 316 (7135), 931-933 DOI: 10.1136/bmj.316.7135.931 (Open Access PDF)

Holland, J. (2004). Should Children Attend Their Parent's Funerals? Pastoral Care in Education, 22 (1), 10-14 DOI: 10.1111/j.0264-3944.2004.00281.x (Open Access PDF referring to this study)

Facebook adds Organ Donor Status

2012-05-01T11:49:00.000-05:00

As you may have heard Facebook is going public as early as next week. In a curious (or expected) show of goodwill and an attempt to make use of Google's (slightly ironic) mantra "Don't be evil," Facebook CEO Mark Zuckerberg announced that today you can add your organ donor status to your Facebook profile. This will be an interesting social experiment in the wild to see if organ donation could go viral. Palliative care clinicians will all recognize the issue with a shortage of potential organs for those in need. We talk to patients and families all the time that are holding on to hope for a possible transplant.

One quality measure as you can see from the picture above is the link to actual state registries.

Could something like this work for advance directives like durable power of attorney or a living will? In addition to listing family you could also list who your DPOA was. It may even lead to an interesting study to see how networked DPOA's are and even if they might be able to find each other better and talk about how to be a better DPOA. I'm unsure if I will post my organ donor status on Facebook. I post a whole lot of other things, but this feels like it crosses a different threshold.

What will you do if you are on Facebook? (I already know what everyone who is anti-Facebook is going to say, but you can share your thoughts too of course!) Is Facebook the right platform to merge online registries for health issues that are struggling to get more traction? You want to be where the eyeballs are right?

The New York Times and The Atlantic cover the issue in more detail if you are interested.

National Health Care Decisions Day 2012

2012-04-12T23:54:00.000-05:00

Yes it is that time of year again. If the weather is starting to get nice and there are a few storms coming through your area it must be Spring and that means Taxes right? Well yes there is April 15th where we have to pay our taxes. But more importantly to the hospice and palliative medicine community is National Healthcare Decisions Day (US) and National Advance Care Planning Day (Canada) on Monday April 16th.

2012 marks the 5th year of NHDD, an initiative spearheaded by Nathan Kottkamp, a partner at McGuire Woods law firm in Virginia. He is living proof of the famous Margaret Mead quote, "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."

I have had the pleasure of working with Nathan in 2011 on NHDD and I strongly support this great initiative which should be thoroughly embraced by the all of us. It speaks to our professional values and gives us a day where we can freely talk about advanced care planning without any sense of taboo feeling of the lingering spectre of death. This is an empowering event that emphasizes "Your Decisions Matter"

There are many simple ways you can participate and the NHDD website is a great resource. If you haven't planned anything for the public you could just focus your efforts on your friends and family. Or maybe your whole hospice office could make sure everyone has completed their advanced care planning. Or you can participate in the blog rally on Monday and use your social media platforms to spread the message. And you can have fun with it like these medical students did in their Star Wars themed Advanced Care Planning Video.

Most of all don't be hypocritical. If you are going to encourage everyone to complete it, take the first step and do it yourself. If you can't convince yourself to complete your advance care plan then how well will you be able to advocate for others.

How Not To Get Frozen In Carbonite Against Your Wishes

2012-04-12T11:40:00.000-05:00

Some 2nd year medical students from my institution (University of Minnesota Medical School) created this remarkable and hilarious video about, well, a Gundersen-La Crosse-style advance care planning project which takes place in the Star Wars universe. You get to witness the horrors of receiving medical treatments against one's wishes (hint: it's from Episode III). Hat tip to Dr. Jim Pacala for letting us know about this. (It's good quality except the sound quality can be fuzzy - it's best viewed with good speakers.)

Blogs to Boards: Question 6

2012-04-09T22:35:00.000-05:00

We welcome comments about any aspects of the questions or the answers/discussions. The feedback that we hope to get in the comment sections of the post will help us all learn important aspects for the boards. We also welcome an interdisciplinary viewpoint when answering these questions, so even if you are not taking the medical boards, your input is still very much welcome.

You visit a patient at home receiving hospice care for cancer. Her pain has been well controlled with long acting morphine 60mg BID and occasional PRN doses of short acting liquid morphine (10mg) over the past few weeks: she had been tolerating this well. She has had recent progressive functional decline and is currently at a PPS of 20%. In the last 24 hours the patient has vomited and has been more lethargic and having difficulty swallowing pills. She appears uncomfortable. In your examination you see a very thin patient who appears to be dying with a prognosis in the few days to a week range.

The patient’s son is a respiratory therapist at a hospital and is insisting you change the patient’s opioid to a fentanyl patch because “it is less sedating than morphine.”

The best response is:

a) Because the patient is cachectic, you tell the family that fentanyl transdermal patches are not indicated because the medication will not be absorbed.

b) Agree with the son and convert the patient to a 37.5mcg/hr fentanyl patch with oral morphine liquid 10mg q1 hour PRN

c) Because the fentanyl will not be effective for over 24 hours, continue the long acting morphine sulfate 60mg BID but give it rectally instead of by mouth

d) Suggest starting a morphine infusion via her port at 1.7mg/hr basal with a 3mg q30min bolus PRN after talking with the son about his concerns about sedation.

Discussion:

Blogs to Boards: Question 4

2012-04-02T22:07:00.000-05:00

We welcome comments about any aspects of the questions or the answers/discussions. The feedback that we hope to get in the comment sections of the post will help us all learn important aspects for the boards. We also welcome an interdisciplinary viewpoint when answering these questions, so even if you are not taking the medical boards, your input is still very much welcome.

Mrs Dole, a 68 year old with 20 year history of Diabetes Mellitus Type II is referred to Palliative Care from Oncology with Stage III Nasopharyngeal carcinoma. Nausea is the key concern. For last 3 years she has had early satiety but maintained weight. Since initiating chemotherapy, she has had nausea for the first 2 days of her chemotherapy cycle, which then resolves.

1 week after the last round of chemotherapy she required intravenous fluids for dehydration. Now 2 weeks later is having intermittent severe nausea. It can be provoked by sudden changes in body position. She fell once because she lost her balance. Usually she does not vomit, but occasionally does. She describes a feeling of the room spinning associated with the nausea.

Of the following options, which drug is most targeted to this patient’s specific nausea type:
a) Ondansetron
b) Prochlorperazine
c) Metoclopramide
d) Diazepam
e) Meclizine

Discussion:

ACGMC Announces New Fellowship Requirements for Hospice, Palliative Medicine & Puppies Training

2012-04-01T11:01:00.000-05:00

Leaders of the APRIL-FUL showing good bedside manner

FOR IMMEDIATE RELEASE: ACGMC and AVMA COE announce new requirements for fellowships in Hospice, Palliative Medicine and Puppies

Chicago, April 1, 2012.

by Abe R Feaulx, Pallimed Special Reporter

In a joint news conference, representatives of the Accreditation Council for Graduate Medical Comedy (ACGMC) and the Alaskan Veterinary Medical Association Accreditation Council on Comedy (AVMA COC) outlined new requirements for accreditation of fellowships in Hospice, Palliative Care and Pupplies (HPCP). As many of you will recall last April 2011, the Association of Palliative Realists Interested in Looking For Unified Language (APRIL-FUL) declared the new name for the field "Hospice, Palliative Care and Puppies."

Explaining the historic cooperation between ACGMC and AVMA COC, ACGMC board chairman Dr. Moe Howard said "the recent change in the specialty's name presented an opportunity for strategic cooperation between our two organizations that we couldn't pass by. Working together, we can fulfill our mission to assure the public that graduates of HPMP training programs are fully competent to carry out all the duties of an HPCP specialist, including finding the right type of puppy to meet a patient and families needs."

The new requirements include:

one month rotation at a veterinary hospital accredited by AVMA COC
six month continuity clinic at a PetSmart or other similar community-based pet training center
inclusion of a pet therapist (the pet, not the person) at all IDT team meetings that the trainee attends
a scholarly project documenting impact of puppies on palliative care patients or staff or volunteers

In a coordinated announcement, the National Alliance of Hospice, Palliative Care and Puppies,(NAHPCP) pledged to quickly adapt the competency statements, measurable outcomes, and competency toolkit to these new requirements. "We'll be integrating evidence-based competencies that are applicable to the new training requirements into the competency toolkit. For instance, it will be very important for graduating fellows to be able to train the pet therapists on hospice IDT's in prognostication skills, such as those exemplified by Oscar the Cat," said Dr. Sitt Phydo, chair of the AAHPCP task force to promote evidence based palliative pets. (PEPP)

When asked for comment, the National Association for Cats in Hospice issued a statement declaring, "We would rather work on our own and not be dependent on any other organizations like some sniveling canine."

Generalissimo Francisco Franco gets an LVAD

2012-04-01T10:28:00.000-05:00

Last Saturday night, live, special correspondent to Weekend Update, Chevy Chase, filed this report on a story that he has been covering since 1975.

To the cheers of supporters, aides to Generalissimo Francisco Franco announced that the Generalissimo has received a left ventricular assist device, also known by the abbreviation, LVAD. The procedure was performed at an undisclosed location. At this time, it is uncertain how this development will ultimately affect the Generalissimo's fate. Aides declined to comment on whether the Generalissimo would be placed on a heart transplant list.

At this time Generalissimo Francisco Franco is not dead.

Stay tuned for further updates.

Hospice Doctor Admits This Work is Very Sad

2012-04-01T09:53:00.000-05:00

April 1, 2012

by Abe R Feaulx, Pallimed Special Reporter

On a cross-country plane flight, Dr. Arya Kidenmee finally admitted to her seatmate, an unabashedly handsome young shower curtain salesman, what the public has known all this time. "I finally had to tell him that hospice work is very sad. I'm not sure why people in hospice and palliative care always say it is rewarding. We have meetings every week where we just sit and cry the entire time, it is absolutely emotionally paralyzing to try and help people with advanced illness."

When reached for comment, seatmate Brock Montgomery noted, "I knew it. I run into people in health care all the time and people who work for hospice always appear so friendly and outgoing, but I knew there could not be anything rewarding in helping people who were in great pain feel better. I'm glad she finally told the truth."

Dr. Kidenmee noted that she has struggled for years in talking at dinner parties and other social gatherings when asked about what she does for a living. "If only I could take people with me and show them how utterly sad my everyday job is, then maybe they would understand that research that shows resilience and a strong purpose to work in palliative care was all a bunch of baloney. Yes I said it, baloney."

Update: It was later discovered after this story was published that Dr. Arya Kidenmee is not really a physician and clearly from her comments has no experience in hospice. She was just trying to get Brock to feel bad for her and ask for her number.

Blogs to Boards: Question 2

2012-03-26T10:08:00.000-05:00

This is the first in a series of 41 posts from both GeriPal and Pallimed to get our physician readers ready for the hospice and palliative medicine boards. Every week GeriPal and Pallimed will alternate publishing a new question, as well as a discussion of possible answers to the question (click here for the full list of questions).

We welcome comments about any aspects of the questions or the answers/discussions. The feedback that we hope to get in the comment sections of the post will help us all learn important aspects for the boards. We also welcome an interdisciplinary viewpoint when answering these questions, so even if you are not taking the medical boards, your input is still very much welcome.

Walking into a room at your hospice inpatient unit you see a tired appearing female patient lying in bed with soft moaning, holding her abdomen. She has end stage CHF and no history of cancer. Review of your notes show decreasing oral intake and increased time in bed. Her nurse reports she disimpacted her yesterday after suppositories and enemas were ineffective for worsening constipation.

Medications include: Fentanyl 50mcg patch (on for several weeks), Senna 2 tabs BID, Colace daily, Recent enema, and docusate suppository
Exam: Cachectic female, Scaphoid abdomen, hypoactive bowel sounds, formed (but not hard) stool on rectal exam.

What is the next best step?
a) Write an order for methylnaltrexone 8mg subcutaneously x1 now.
b) Switch her from a fentanyl patch to a morphine pump so you can better manage her abdominal pain.
c) Write an order for octreotide 200mcg subcutaneously twice daily for three days.
d) Place an NG and give her polyethylene glycol daily until she has a bowel movement or regains ability to swallow and you can remove the NG tube

Discussion:

Blogs to Boards - AAHPM 2012

2012-03-08T16:11:00.000-06:00

For those who attended our blogs to boards session - here is the link to the PDF's
(please email christian@pallimed.org if you have difficulty with it)

http://www.tagmydoc.com/dl/go8DS/43P (Password needed)

If you didn't get the chance to attend, don't fret. We plan to post a question a week on both GeriPal and Pallimed to get everyone ready of the 2012 palliative care boards.

The 3rd Annual Pallimed/GeriPal Meet-and-Greet at the AAHPM/HPNA Annual Assembly

2012-03-07T22:05:00.016-06:00

As seen on GeriPal...It is on - the 3rd annual Pallimed/GeriPal Meet-and-Greet during the AAHPM / HPNA Annual Assembly!

Desktop Backgrounds

This year's party will be held at the Tarantula Billiards Bar and Grill on Thursday, March 8th. We will plan to start around 9:30 PM. We are working on reserving the four Billiards tables in the back, so look for us there.

Tarantula Billiards Bar and Grill is one block away from the convention center. The address is 1520 Stout St. Denver, CO.

The party is open to all, so drop on by.

More Echoes of Temel et al.

2012-02-08T11:00:00.001-06:00

This week the American Society of Clinical Oncology (ASCO) published a new Provisional Clinical Opinion (PCO) as an early release article online, The Integration of Palliative Care into Standard Oncology Care. Seven published RCTs formed the basis of the "Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden."

The Oncology Report published a background piece on this PCO, which highlights the impetus of this paradigmatic shift in comprehensive cancer care as the Temel et al., article in the NEJM in July 2010. Pallimed contributors have posted more or less directly on the reverberations here, here, here, here, here, here and most recently here, where Lyle presaged this development. The background piece also highlights barriers to implementation including resource limitations such as the lack of clinic-based palliative care and community-based non-hospice palliative care, Stark law restrictions, reimbursement structures, more traditional oncology culture, and palliative care workforce limitations. The piece anticipates support and direction from payers as well as cultural changes among up-and-coming practitioners.

One unnerving thing that I noticed among the selected quotes in the background piece was an apparent, persistent confusion between palliative care and hospice, which I perceive as a barrier to effective integration. I face it fairly frequently in my polite chit chat with other residents, fellows and attendings about my training and career trajectory. This issue of confusion and naming has been remarked upon at Pallimed in the past, e.g., here, here and more humorously here.

Drug Shortages in the US and Abroad

2012-02-03T06:00:00.000-06:00

World Cancer Day is February 4th, and in honor of this day, I'm posting about a critical issue we have written about on Pallimed before... access to medications. There are three developments in the last few days I think are worth knowing about...

by NASA's Marshall Space Flight Center

by Phil McIver

1) The Life Before Death feature film premiered in Singapore on February 1st. This movie about the international pain crisis accompanies 50 short films (33 have been released on YouTube so far), a one-hour TV documentary (not yet released), and two advocacy websites (here and here). If you are interested in hosting a screening of the feature film in your area, click here. (Previous related posts are here, here, and here.)

2) The Morphine Manifesto has been released by Pallium India, the International Association for Hospice and Palliative Care (IAHPC) and the Pain & Policy Studies Group /WHO Collaborating Center at the University of Wisconsin. You will recognize many of the launching partners in palliative medicine and other important organizations who have a strong interest in the treatment of pain, like the American Cancer Society, LIVESTRONG, and Human Rights Watch. It basically calls on governments, pharma, and health care institutions to guarantee affordable access to oral immediate-release morphine. If there are already more expensive opioid formulations in countries, it demands that immediate release oral morphine also be made available.

by Ingrid Taylar

This is extremely important because many countries have supplies of injectable morphine, fentanyl patches, and sustained-release morphine before they have oral immediate release morphine available. Not that having the other medications is bad. However, not having safely-titratable, inexpensive opioids that can be given easily in the inpatient and outpatient settings is a HUGE problem in many countries. For instance, they may have fentanyl patches or extended release morphine, but no immediate release, which makes safe titration more difficult and costly. Cost matters because in low resource countries, the more expensive it is, the fewer people you can treat with it and many will get no treatment at all. Injectable morphine is also an important drug, but without oral immediate release morphine, outpatients have little hope of getting medication for severe break-through pain. Take a look at the list of supporting people and organizations. Are you surprised at the number of hospice and palliative medicine organizations now? We are gaining a voice all over the world!

(Previous related posts are here and here.)

3) The Drug Shortage Prevention Act (HR 3839) sponsored by Congressman John Carney (D-DE) and cosponsored by Larry Bucshon (R-IN) was introduced on Jan. 31st. See the announcement info from Carney's website. If you aren't worried about drug shortages, you should be. There were over 230 of them last year in the United States. THE UNITED STATES! (I'm only half kidding in my feigned incredulity.) You've probably seen the media coverage of chemotherapy and other drug shortages and the gray market trade of medications (here's a link to a story from last year from PBS). Eye opening and worrisome to me is that drugs I have thought of as "common" are having serious shortages as well. Two recent examples of severe shortages I know about because of having to change my practice to deal with them are parenteral dexamethasone and parenteral midazolam. Christian recently posted on the shortages, with a great link from the American Society of Health-System Pharmacists for a list of current drug shortages. I looked at it and was shocked because all of the commonly used opioids are on the list because of shortages of at least one concentration or tablet size. Granted, many of the medications listed have lot of other concentrations or tablet sizes available, but some drugs on the list do not. Many medications only have one or two manufacurers.

by Martin Thomas

The bill has been referred to the House Energy and Commerce Committee and the Judiciary Committee according to Library of Congress THOMAS website (put in under Bills "HR 3839"). You can find out if your representative sits on either of these committees with an easy to use website with info on who is on the committees at govtrack.us. The text of the actual bill is not available yet, but do you think this is a reasonable approach to deal with this very real and growing problem? If not, what do you think would help make sure that we have access to the medications our patients need?

Stand up to cancer by advocating for access to medications in the US and around the world!

The Prognostic Frame of Healthcare for Older Adults (and Everyone Else)

2012-01-16T15:00:00.000-06:00

I have a 1 in 542 chance of dying in the next year. In other words, for every 542 men who are the same age as me, one will die in 2012. For those of us who survive until 2017, the probability of death during that year will be 1 in 364. This probability will increase fairly predictably over the years. Gompertz Law of human mortality suggests that the rate doubles every eight years. Supposedly, this law stands the test of time and across populations.

I'm certain actuarialists routinely figure out probabilities that a man my age will become seriously ill or disabled as well. Statistics put mathematical meat onto a mild, chronic anxiety about dying or becoming ill. It's something that most of us feel and I don't trust people who say that they don't have any anxiety about it.

Source: Meandering Through Mathematics

What does one do with that anxiety? Prepare. Prepare for the "worst case" scenarios. Name a surrogate. Talk to that surrogate about theoretical scenarios and make sure they know what you value most. Put it in writing. Get life insurance. Learn to respond to the anxiety you have. If you make it through this next year, the chances are lower that you'll make it through the subsequent year, so you might as well get ready.

Don't be superstitious. Acknowledging death does not make it happen.

Live your life. There is a 99.8% chance that you'll live through the next year if you are my age and your life expectancy going forward is an additional 40 years. Save for retirement. Anticipate being around to pay for your kids' college education. Exercise. Eat well. Seek appropriate preventative healthcare. Find what you love to do and do it. Breathe.

And if you live long enough, you'll likely develop a chronic disease. People are remarkably resilient and can adjust, so don't worry about this too much. With illness, you'll likely develop a greater awareness of your own mortality. Hopefully, you've prepared. If not, it's never too late.

But you'll go to your doctor with the expectation that he'll help improve your quality of life in the face of the chronic disease and also that he'll know what to do to help you avoid death. You've seen the ads on TV for such and such a pill which will improve your vigor. You'll look ten years younger than the average person with your condition, be able to win the stuffed animal for your grandkid, and the lights will go off in your bedroom a full 30-45 minutes before you plan on going to sleep. You imagine it to be so perfect that if a life-threatening condition arises and your doctor doesn't have a pill to fix the problem, you'll think, "This is the year 20XX, why don't they have a pill for this?"

This is the generic frame for the typical clinic visit for patients in the early 21st century. You know that doctors can't fix everything. Your doctor knows she can't fix everything. Both facts frequently go unspoken between the four walls of the clinic room as both sides labor to prevent a "premature" death. It's a noble and worthy goal but Gompertz Law remains. It occasionally crosses your mind: What would it be like to get sick, what type of interventions will you have to go through, what will happen if you become ill and don't have enough support to remain at home? It's crossed your doctor's mind, too. She's seen others go through it, but it's easier to talk about A1C's, LDL's, and holiday plans so concerns go unspoken. Advance care planning in the office remains challenging for multiple reasons, but the frame of the visit does not easily permit acknowledgement of death or other difficult outcomes.

Enter ePrognosis. Researchers from UCSF (including colleagues from Geripal) reviewed prognostic indices for older adults in JAMA last week. The research and the slick new ePrognosis website with easy to use prognostic indices has been widely publicized (all the way around Le Monde!). Their review identified several indices for predicting prognosis in community dwelling, hospitalized, or nursing home bound older adults. The indices aren't perfect. For instance, most need more testing for validity in heterogeneous populations. (See Ken Covinksy's wise analysis at Geripal.) If you're looking for an "expiration date" (who would do that?), then don't hold your breath. We can look at actuarial data or Gompertz Law to get a general sense of prognosis. The tools on ePrognosis sharpen the lens based on variables related to disease state, functional status, etc.

I've written about the importance of framing for discussions about code status in hospitalized patients. In that setting, it's helpful for the patient and doctor to have a common understanding of the patient's prognosis before discussing the code status decision. The same principle applies to the outpatient setting in a non-terminally ill population. My hope is that ePrognosis will help providers prepare the frame for the advance care planning discussion. As Carol Levine points out in her comment below Ken's Geripal post, ePrognosis may unintentionally turn into a "parlor game" for the general population. Even though ePrognosis is intended for provider use, I'm not convinced that use amongst the general population is a bad thing. It may be quite the opposite, as long as you can go "talk to your doctor" about it!

It's always appropriate to prepare for multiple scenarios. Explicit discussion of prognosis, while not an absolute prerequisite, can serve as an entree to discuss the possible scenarios. The healthy young man looks at his probability of death and buys life insurance but prepares at the same time for life as a 50, 60, and 70 year old. In old age, it's still appropriate to prepare for multiple scenarios. If you are an 80 year old with a Mazzaglia Index score is 3, then you have an 8% chance of dying in the next 15 months and a 30% risk of being hospitalized, it makes sense to do some preparation for those events. However, you also have a 92% chance of NOT dying in the next 15 months. What then? What will it take for you to age in place? What happens if frailty or other circumstances make this impossible? Prepare for the most likely and worst case scenarios. It should be your expectation that your healthcare team can help you prepare.

In the JAMA article, the authors suggest using the indices to guide discussions about preventative care (such as whether to pursue a screening colonoscopy in a woman with advanced COPD and comorbidities). This use of the indices makes sense. Colonoscopy, while generally safe, is not without risk of complications, especially in older adults with comorbidities. It's appropriate for physicians to use the indices along with their clinical judgment to guide their recommendations. This has brought about accusations of bedside rationing, which is really a separate discussion. Medicare covers screening colonoscopy once every ten years. I wouldn't anticipate physicians refusing to order a colonoscopy for a non-terminally ill elderly patient based on a prognostic score.

It remains to be seen whether ePrognosis will increase awareness of prognosis in non-terminal, older adults or whether this will impact clinical decisions. I think it will. Time will tell.

(See also this recent NEJM perspective piece and related Geripal commentary.)

The Alignment of HPM and Oncology: Palliative Care Influence on Chemotherapy Use in Metastatic NSCLC

2012-01-02T11:20:00.000-06:00

We continue to learn more from the landmark randomized controlled trial conducted by Temel et al from NEJM which demonstrated that outpatient palliative care consultation for patients with newly diagnosed Stage IV lung cancer improves quality of life and may also improve survival by a few months.

Although the survival advantage was a secondary outcome in the original NEJM study, it remains the headliner outcome. For many who were stuck in an old paradigm of considering palliative medicine as the option of last resort after all other therapies have failed, there was a strong association (mentally, not scientifically) with an idea that hospice and palliative care for patients with cancer meant “letting go of the rope” (i.e. stopping chemotherapy) and that when the transition was made, the patient would go into a free fall towards their death as a result of “letting go.” Although some lesser quality studies had already suggested that hospice and related interventions might not shorten life and may even prolong it, it was still pleasantly surprising (and for some, inexplicable) when this randomized controlled trial demonstrated a survival advantage for patients seen by a palliative care team.

"Aikido" from
Wikimedia Commons

As with any result in a clinical trial, it helps to have a plausible mechanism of action to explain the result. Since this was a “bundled” intervention, it may be difficult to tease out the exact reason why palliative care patients lived longer. Many explanations have been proposed. Chemotherapy definitely has a role for life-prolongation but has side effects. Could it be that palliative care helps patients with those side effects, allowing them to receive more of it? Conversely, could palliative care “protect” patients from toxic chemotherapy near the end of life when chemo may do more harm than good? Alternatively, is there something intrinsic to palliative care which prolongs life irrespective of chemotherapy?

Last week, the Journal of Clinical Oncology released a secondary analysis of the data from the initial NEJM study data which further elucidates the differences in chemotherapy utilization between the palliative care and standard groups to try to help answer some of these questions. The authors also reexamined healthcare utilization at the end of life. Here are some bottom lines. The palliative care wing did not appear to receive more chemotherapy. The two groups did not differ with respect to initial anti-cancer therapy (and only one patient…in the standard care wing, incidentally.... didn’t receive anti-cancer therapy at the onset of the trial). They examined the use of multiple lines of chemotherapy (first, second, third, fourth, and beyond). Once again, there was no difference between the groups nor was there any difference in how much time it took for the groups to arrive at the next line of chemo.

How did the two groups differ, then?

Days between last IV chemotherapy dose until death (Palliative care group median 64 days vs. Standard Care median 40 days, p=.02). For oral chemo, the results were 27 days and 17 days respectively but this was not statistically significant.
Chemotherapy use in last 60 days of life (Palliative care group 52.5% vs. 70% in the Standard Care group, p=0.05). A trend towards less chemo use in last 30 and last 14 days of life as well but not statistically significant.
Hospice utilization: While there was no difference between groups with respect to the percentage of patients utilizing hospice, the palliative care group received hospice services longer (median of 24 days vs. 9.5 days in the standard care group). In the palliative care group, 60% of patients received hospice >7 days before death compared to 33% in the standard care group. (More on this below.)

When examining location of death, a slightly greater proportion of the palliative care group died at home compared to an inpatient hospice, hospital, or nursing facility, but this was not statistically significant.

It should be noted that the study was not powered to look at many of these outcomes such as chemo use in the last month and 14 days of life as well as location of death. For instance, with a larger sample size, it’s possible that the increased incidence of home death in the palliative care group might have risen to statistical significance. However, the lack of statistically significant difference here is not surprising. While hospital based palliative care can prepare patients/families for the challenges which may come near the end of life, the provision of adequate care within the home to ensure a peaceful death involves many factors which may be outside the purview of the intervention described in the study (e.g. the development of unpredictable symptoms which are difficult to manage at home, capability of caregivers, capacity of the home hospice, etc).

The study still doesn’t definitively answer the survival mechanism of action question, it only suggests that aggressive chemo at the end of life is not the reason. The median survival advantage in the original study was about 2.7 months. In this study, patients receiving the palliative care intervention were free from IV chemo 24 days longer at the end of life and received 14 days more of hospice which doesn’t add up to 2.7 months. Avoidance of toxic chemo near the end of life and provision of supportive hospice likely play a role, but in the shadows, there appears to be a survival benefit which is unrelated to chemo avoidance or hospice. Improved symptom control and psychological well-being, perhaps? In Temel et al, the primary outcome was improved QOL 12 weeks after initiation of the intervention.

While we are talking about the study being underpowered, I do have to point out that there was a statistically insignificant trend towards the palliative care group having a longer time from first to second line and from second to third line chemo (0.8 months longer in each case). This result came about only when participants were censored at time of analysis--when the numbers were crunched censoring participants at either date of death or date of analysis, there was no difference between groups in time to next line of chemo. I'm not sure which method is better for detecting a difference between groups, but this does suggest that with greater power, the study might have detected a statistically significant difference. In other words, we still can't rule out the possibility that palliative care helped patients receive more chemo early on in the course of their cancer therapy.

It was never my hypothesis that palliative care helped patients receive more chemo, thus resulting in the survival advantage. I've always thought that the benefits of excellent symptom/psychosocial support and avoidance of chemo near the end of life were more plausible explanations. Don’t confuse this with a bias against chemotherapy for patients with advanced lung cancer. I fully embrace the role for chemotherapy in advanced lung cancer and the palliative care practitioners in this study were obviously not chemotherapy obstructionists. I am familiar enough with oncology clinical trials (without being an oncologist) to know they lend more guidance to oncologists regarding when to start the agents and less guidance regarding when to stop. While sometimes the decision to stop is clear cut (patient has catastrophic complication or documented progression of disease on imaging with performance status slipping to ECOG 3), there are other times when the decision is more arbitrary.

For example, consider a patient in the middle of third line chemo who is experiencing more fatigue whose ECOG slips from 1 to 2 where everyone is suspecting progression but it may be just as easy to continue with the status quo until the next scan or until a complication comes up. At this point, many patients may be thinking that pushing forward with chemo isn't worth it to them, but what's next? That question is often wrought with fear. Palliative care might help “tip the scales” towards discontinuation in this circumstance a couple of ways. Through advance care planning discussions, "what next" becomes clearer: The role of hospice may be better understood and end of life fears already addressed. Even if hospice isn’t initiated immediately, palliative care is already part of the status quo, perhaps enabling either the oncologist or the patient to be more proactive with saying “hey, this (chemo) doesn’t seem like it’s working” with less of a feeling that they are “giving up.”

One of the most frequently noted caveats to this study is the fact that it's a single institution. Other institutions vary with respect to patient population, oncology practice, and palliative care team practice. The palliative care intervention brought the median hospice length of stay just above the national median (21.1 days in 2009) and 60% of the palliative care patients received hospice >7 days which is below the national rate of 65%. (Source: NHPCO Facts and Figures). It's worth remembering that the palliative care intervention followed guidelines from the National Consensus Project for Quality Palliative Care. Adherence to those guidelines at other institutions should also mean that patients will see many of the same benefits even if the results of Temel et al and the present study couldn't be exactly replicated.

It’s notable that the American Society of Clinical Oncology (ASCO) is looking carefully at the quality of end of life care within oncology programs (quote from present study):

“With accumulating evidence for the benefits of earlier referral to hospice for patients with terminal cancer, leaders in oncology have established guidelines for quality end-of-life care. The American Society of Clinical Oncology Quality Oncology Practice Initiative has delineated several key metrics for determining high-quality treatment near death, such as no chemotherapy within the last 2 weeks of life, referral to hospice, and enrollment in hospice care more than 1 week before death. Palliative care clinicians, who are accustomed to practicing within a multidisciplinary team, are ideally suited to support oncology providers, patients, and families in discussing and planning for such treatment at the end of life. To date, to our knowledge, no studies have shown the utility of these services for altering the quality of end-of-life care.”

The QOPI measures are worth reviewing. As palliative care programs track metrics and achieve TJC certification, it's only natural that we should work with our oncology colleagues to help with the end of life QOPI metrics as well. The results of this study indicate that our work helps oncologists with those measures.

Lastly, a friendly editorial which accompanies the study is also worth a read.

Christopher Hitchens: Dying as an Atheist

2011-12-16T06:00:00.000-06:00

Image credit: Wikipedia

Christopher Hitchens, noted author and philosopher died December 15, 2011 leaving behind many essays, books, and other writings as well as contributing to several lectures, ethics/religion debates, and TV talk shows. His acerbic style often ruffled feathers as he attacked religious dogmatism.

As one of the most famous outspoken atheists of this era, his thoughts on being diagnosed with an incurable disease would be a powerful insight into how atheists might approach illness and death. Where others might retreat from the public spotlight, Hitchens attacked his cancer through writing.

As a doctor caring for patients facing their own mortality, understanding their spirituality becomes an important part of caring for the whole person. I have seen many caring family members and friends inquire to me if their was enough time to get the appropriate clergy to help a patient convert or be saved. A person dying as an agnostic/atheist or even not the right religion becomes a very important focus for some people. Some have asked me or chaplains if we have ever seen any 'deathbed conversions' or someone who died without being saved. I never really expected this before I became a palliative medicine fellow.

What surprises me about the inside peek that Hitchens gives us with his writings is that many of his feelings, thoughts and experiences are really about the human condition and I have seen and heard similar things from religious patients as well. In reading his articles it helps me understand that despite all our differences we are all human and as we die our experience is both unique and universal.

I wanted to share a few choice quotes from his articles here. Any one of them would be a good review for your team or learners on discussing the different approaches to dying that our patients experience.

The quotes come from the following Vanity Fair articles:
Unanswerable Prayers - Oct 2010
Miss Manners and the Big C - Dec 2010
Unspoken Truths - June 2011
Trial of the Will - January 2012 (published posthumously)

On stories about any possible deathbed conversions:

In which case, why not cancer of the brain? As a terrified, half-aware imbecile, I might even scream for a priest at the close of business, though I hereby state while I am still lucid that the entity thus humiliating itself would not in fact be “me.” (Bear this in mind, in case of any later rumors or fabrications.)

On holding hope and realism:

The absorbing fact about being mortally sick is that you spend a good deal of time preparing yourself to die with some modicum of stoicism (and provision for loved ones), while being simultaneously and highly interested in the business of survival.

On losing his voice:

Now, if I want to enter a conversation, I have to attract attention in some other way, and live with the awful fact that people are then listening “sympathetically.” At least they don’t have to pay attention for long: I can’t keep it up and anyway can’t stand to.

On sharing stories about other people's cancer:

...your narrative may fail to grip if you haven’t taken any care to find out how well or badly your audience member is faring (or feeling).

On a false cliche (What doesn't kill you makes you stronger.):

After all, if it were otherwise, then each attack, each stroke, each vile hiccup, each slime assault, would collectively build one up and strengthen resistance. And this is plainly absurd. So we are left with something quite unusual in the annals of unsentimental approaches to extinction: not the wish to die with dignity but the desire to have died.

On pain:

It’s probably a merciful thing that pain is impossible to describe from memory. It’s also impossible to warn against. If my proton doctors had tried to tell me up front, they might perhaps have spoken of “grave discomfort” or perhaps of a burning sensation. I only know that nothing at all could have readied or steadied me for this thing that seemed to scorn painkillers and to attack me in my core.

Palliative Drug Shortages

2011-12-16T02:10:00.004-06:00

There was a time when I heard about chemo shortages, and I thought that must really force some tough choices for patients and physicians. But thankfully (I thought) drug shortages for generic non cutting edge medications that have been around for a long time like the ones commonly used for symptom control would probably be relatively immune.

But in the past 2 weeks I began hearing rumblings from our pharmacists about a possible shortage of IV lorazepam. As I researched this more it appears to be a much bigger problem. It wasn't just local or even regional but national. Thanks to the American Society of Health System Pharmacist (ASHP) website I could find out lots of info that is up to date on the supply chain of key meds for hospice patients. They have a drug shortage page which a pharmacist (Mick Schroeder) turned into an app for iPhone and Android.

Quick quiz: How many medications do you think are on the current drug shortage list? (Answer at the end of the post)

But the thing about the lorazepam shortage is that the other benzodiazepines you might consider for conversion are also involved in this shortage. The reasons for the shortage are (via ASHP):

Bedford discontinued lorazepam in May, 2011 to concentrate on the manufacturing of other products.
West-Ward acquired Baxter’s lorazepam injection products in May, 2011. The company cannot provide a reason for the shortage.
Hospira states lorazepam vials are on shortage due to increased demand. The 1 mL iSecure syringes were discontinued in September 2011.

Converting patients to other benzos seems appropriate but midazolam and diazepam are also listed as having drug shortages on ASHP. And even if you do have them in your pharmacy supply chain, without injectable lorazepam there is bound to be a run on these other two injectables thereby increasing the strain.

While home hospice patients may do fine with PO/SL lorazepam, inpatient units and hospitals may depend more heavily on injectable benzos. I am curious to see what other hospice and palliative clinicians are doing to handle this shortage that apparently is expected to last until February or March. Please share your thoughts in the comment section.

(Related: Outcome Resources blog has a post on the lorazepam injection shortage as well.)

(H/T to @HospiScript and Outcome Resources aka @HospicePharmacy)

Quick Quiz Answer: Approximately 210 drugs are listed as currently being in short supply. I thought it was going to be 30. Yikes!

Engage With Grace 2011: Occupy With Grace

2011-11-23T21:14:00.001-06:00

For the past few years at Thanksgiving, Pallimed donates a blog post to Engage With Grace, a movement to encourage a new tradition of using the family time during this American fall tradition to get families talking about what is important to them. This is a movement you can easily get behind in person if you are an advocate for good patient centered health care, which you likely are if you are reading this blog. So donate your blog, Facebook update, Twitter account (#EWG) to Engage With Grace this holiday weekend. And then put your money where your mouth is and bring it up yourself while your family is together.

Here is the this year's post from the Alexandra Drane and the Engage With Grace Team:

----------------------------------------------------------------------

Occupy With Grace

Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.
Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it - it's the Occupy Wall Street movement that's got people talking.

Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn't an issue we need to raise our fists about - it's an issue we have the luxury of being able to hold hands about.

It's a mission that's driven by all the personal stories we've heard of people who've seen their loved ones suffer unnecessarily at the end of their lives.
It's driven by that ripping-off-the-band-aid feeling of relief you get when you've finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they'd want for themselves, and knowing you could advocate for these wishes if your loved one weren't able to speak up for themselves.

And it's driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you're all on the same page. In the words of the amazing Atul Gawande, you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!

Here are the five questions, read them, consider them, answer them (you can securely save your answers at the Engage with Grace site), share your answers with your loved ones. It doesn't matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.

We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country's sickest and most vulnerable.

Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:

For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they're in a crisis, which isn't the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor's office.

It's a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.

This is a time to be inspired, informed - to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.

Wishing you and yours a happy and healthy holiday season. Let's Engage with Grace together.

To learn more please go to www.engagewithgrace.org. This post was developed by Alexandra Drane and the Engage With Grace team.

A Better Kind of Care

2011-11-16T15:18:00.015-06:00

Paul White, shown here at a chemotherapy session with his daughter Laurie Alexander.

(Essdras M Suarez/Globe Staff)

In a July 24th article, A Better Kind of Care, The Boston Globe journalist Kathleen Burge introduced readers to Paul White, a successful owner of an engineering and manufacturing business, a man with a wife, two adult daughters, five granddaughters, and stage IV renal cell carcinoma. He had beat the odds repeatedly, having survived over seven years since the discovery of metastases. Despite availing himself of surgery, every new advancement in chemotherapy and participating in a clinical trial, his cancer was implacably progressing. Contemplating starting on what might be the last chemotherapeutic agent, he had also started seeing Dr. Vicki Jackson, Director of the Palliative Care Unit at Massachusetts General Hospital.

IMHO, the article did a terrific job of fleshing out the concerns, dilemmas, and ambivalence of patients, family members and healthcare providers in the uncertain, lurching and insidious territory of life-limiting/life-threatening illness and its treatments. It also did a great job of featuring and explaining palliative care, and its role upstream from hospice care. Here are the published letters to the editor on the story.

This morning I read in the Globe that Mr. White died on November 5th.

We have posted here before at the passing of patients with variously documented life-limiting/life-threatening illnesses, e.g., here, here and here. I thought I would respectfully post this retrospective with gratitude to the many patients who allow us to glimpse some of the most difficult situations in hopes of connecting to, and of helping, others.

"I Am a Doctor Working in Palliative Care. Ask Me Anything."

2011-11-15T16:00:00.004-06:00

The social news website Reddit advertises itself as the "Front Page of the Internet." The site might as well be called "Procrastination Grand Central" (based on my experience).

For those unfamiliar with the site, Reddit relies on a simple upvote/downvote system which brings popular stories/posts to the top of the page. Once you click on a post, you will notice many comments which are once again ordered based on popularity. One can also search the site based on keywords.

A lot of the stuff posted on the site is, well, junk... but there is enough good stuff to keep you occupied if you aren't not careful.


by Eva B

One of the "subreddits" on the site is entitled "IAMA," which doubles for "I am a" and "ask me anything." Several posts strike me as notable. For instance, see "IAmA terminally ill man with ALS, AMA" or "IAMA 20 something that supports his two disabled/terminally ill parents about to deal with his 2nd eviction. AMA."

The "subreddit" has a verification system which doesn't seem to be applied to every post. Veracity issues aside, it's curious to watch public interactions among (mostly anonymous) people attempting to grapple with these issues.

Of note, an anonymous Australian palliative care physician recently posted an "IAMA" which turned out to be fairly popular. Many excellent questions were asked, such as:

Several people didn't ask questions but merely thanked the physician for his or her work.

This is yet another example of how social media can be used to educate the public, although it needs to be done carefully. For instance, the doctor was not transparent in the introduction about the fact that he or she is from Australia- this fact was buried in the comments in the thread of replies. While there are many commonalities in the practice of palliative care around the world, some practices are system-specific so one could see the potential for misunderstanding. The doctor does seem to mention this a few times when it may be relevant. And, as always, one should stay away from providing consultation regarding specific issues which may create a liability concern. (Consult your institution's social media policy if they have one.)

Furthermore, the physician's response to the last question listed above (when should I be looking at palliative care, if at all?) leaves much to be desired. The response starts out appropriately: "I think the best person to determine when you should be considering palliative care would be your main treating physician" but then unravels very quickly when the physician suggests that being "minimally responsive" to treatment would prompt consideration of a palliative care referral. We know by now that earlier palliative care consultation for this patient may be appropriate. I'd be interested in the Australian perspective on the NEJM study to help us understand if system differences change the relevance of the study.

Predictably, the poster with Stage IV lung cancer responds to the physician's comments, "Thank you for your response! Knowing when to seek out palliative care certainly helps! I hate to say it, but I'm going to do my best to never have to meet you in a professional setting!"

I've written an additional response to the question. If you have comments you wish to make, it takes about 10 seconds to sign up for an anonymous account (no email address required).

See some other relevant "IAMA"s:

What do you think of this use of social media? Should the hospice palliative care community actively monitor sites like this for opportunities to educate?

REMS education comment period

2011-11-11T08:30:00.011-06:00

The FDA has opened a comment period, closing December 7, on it's just-released draft "Blueprint for Prescriber Continuing Education Program." The accompanying request-for-comment states that "The central component of the Opioid REMS program is an education program for prescribers and patients." If you've missed the previous discussion of opioid REMS, see Drew's blogs here and here and especially Stew Leavitt's extensive analysis last April.

The actual REMS stuff that has come out so far has not been as draconian as some had feared when first announced. The education Blueprint is pretty benign and pretty much (what should be) standard of care for almost any medication: the prescriber should know about the medications' potential negative effects, take them into consideration in prescribing and in teaching/counseling patients, and systematically monitor effects. Naturally, there is a fair amount about managing the risk of intentional misuse. The content outline provided by FDA to educational providers states that education must include information on: (1) weighing the risks & benefits of opioid therapy; (2) choosing patients appropriately; (3) managing and monitoring patients; (4) counseling patients on the safe use of these drugs; (5) information on how to recognize evidence of or the potential for opioid misuse, abuse, and addiction.

There are explicit statements that the educational basics outlined in the Blueprint do not have to be part of required education for licensing of prescribers, although apparently the FDA will approve these basic educational offerings. They estimate the basics can be presented in 2-3 hours. The industry consortioum has submitted suggested supplemental content that could take 10x that amount of time or more. FDA explictly says they will not require nor review supplemental educational content. The other explicit exclusion is Patient-Provider Agreements (these have been called opioid contracts in the past). FDA says content about these as a managment option should be included, but will not be required as a standard for pain practice. Industry is expected to provide grants to CE providers to develop and present these courses free of charge to prescribers. ACCME standards are to be maintained.

My main concern, both viscerally and cognitively, is the generally negative tone. All the emphasis is on negative effects/risks with nothing at all said about how valuable and effective opioids are when prescribed and used as intended. There are statistics presented about the misuse, abuse, and non-medical use of opioids, but nothing at all about the prevalence of pain, as described in (competing?) government publications such as the "Special Feature: Pain" chapter in the CDC report Health, United States, 2006 and the IOM 2011 report Relieving Pain in America. See Stew Leavitt's discussion on the use/misuse of statistics in government publications on the prescription drug abuse "epidemic."

The Blueprint is really not about managing pain--it's about prescribing and monitoring opioid analgesics. The target audience is probably primary care practitioners, but there are plenty of specialists who use opioids poorly, if at all. An educational emphasis on safe prescribing of these agents is probably not a bad thing, although the tone could reinforce the prevalent perspective that these medications are too dangerous to prescribe.