Sorry about the extra post, but....

The Center to Advance Palliative Care (CAPC) is circulating a petition (originating from the American Pain Foundation) to urge the FDA to protect the rights of people with pain regarding access to opioids, as the REMS process unfolds.

The text of their press release/call to action:

As you are probably aware by now, the U.S. Food & Drug Administration (FDA) is currently working with makers of long-acting opioids to develop a plan to reduce opioid diversion/illicit use. This plan is known as Risk Evaluation and Mitigation Strategies, or REMS. The FDA is currently accepting comments from the general public until June 30, 2009 surrounding this issue. You should know that some of the comments the FDA has received have called for an outright ban or moratorium on certain opioid pain medications.

CAPC is distributing a petition created by the American Pain Foundation in order to help facilitate your response to the FDA. Please sign this petition TODAY to help make sure that patients in pain continue to have access to effective pain care, including prescribed opioid medications. Your voice and the voices of other pain advocates are needed to remind decision makers that the lives and livelihoods lost to pain are worth no less than victims of drug misuse or abuse. The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legitimately prescribed these medications.

Lancet has an editorial about euthanasia (by a palliative doc and UK Member of Parliament**) and the shift in the UK debate about euthanasia from 'relief of suffering' to 'patient choice/control.'

It begins provocatively:

“I have never seen such a clear cut case for euthanasia” were the general practitioner's words when he referred to me a young man with a fungating malignant spinal tumour. The patient's distress was palpable and compounded by neuropathic pain. But, most of all, he hated losing control through creeping paraplegia and through his increasing dependence on his young wife, who was struggling to cope with their two children and 7-week-old baby. He asked me to end it for him, and his request persisted for several weeks. He would have passed all the tests about mental competence that euthanasia campaigners suggest and appeared to fulfil all the criteria in legislation from other countries: he was terminally ill with a short predicted prognosis, suffering unbearably, persistent in his competent request, fully informed, and had no psychiatric condition.

That was 1991. In 2001, he telephoned me to say that his beautiful wife had been diagnosed with pancreatic cancer. She died some months later, and he has brought up their children alone, aware that the law in Britain had saved them from being orphaned. Yet the media campaign for legalising what is euphemistically called “assisted dying” rarely shows this side of the coin.

Her consultation document, intended as a prelude to a bill in the Scottish Parliament, proposes to legalise euthanasia not only for people who are terminally ill but also for others “enjoying otherwise satisfactory health but with degenerative, irreversible conditions”, for “patients who unexpectedly become incapacitated to a degree they find intolerable”, and to people “who are not terminally ill, suffering from a degenerative condition, or unexpectedly incapacitated but who find their life to be intolerable”. These wide-ranging proposals seem a natural consequence of the shift in emphasis of the pro-euthanasia campaign from the relief of pain and other symptomatic distress in the dying to an agenda based on personal choice and control.

Briefly - this week's NEJM has a report about hospice trends (free full-text here), focusing on issues to do with extended hospice lengths of stay, payment, and concerns that for-profit hospices are gaming the system a little (that language is not used, but implied). It doesn't directly mention 'hospice cap' issues but clearly those issues are relevant to the article. Mostly it summarizes MedPAC's recent recommendations and the impact implementing them could have on hospices.

A quote:

The increasing proportion of lengths of stay exceeding 180 days and the variability in length of stay among hospices also convinced MedPAC that Medicare should change the manner in which patients are recertified for eligibility. After being deemed eligible by two physicians, one of whom is the hospice medical director, beneficiaries elect hospice care for defined periods, the first of which is 90 days. After a second 90-day period, patients can be recertified for an unlimited number of 60-day periods if their life expectancy remains 6 months or less. But after initial approval, recertification falls solely within the purview of the hospice's medical director, not the patient's physician. In an effort to improve adherence to the coverage criteria in determining eligibility, MedPAC has recommended requiring documented physician oversight as well as additional medical review of long stays at hospices with a disproportionate number of such stays — to "identify providers with inappropriate admissions or recertification practices."

MedPAC also recommended that the Office of Inspector General investigate the prevalence of financial relationships between hospices and long-term care facilities "that may represent a conflict of interest and influence admissions to hospice" and examine the enrollment practices of hospices with patterns of unusually long or short stays.

Journal of Medical Ethics has an article about hospitalized patients' understanding of and attitudes towards code status discussions (see also this blog post about a similar study). The study involved interviewing ~140 newly hospitalized patients (median age 48 years, 92% white, over 80% had were expected to live more than 2 years according to their treating physician) about their understanding of and attitudes toward CPR, code status orders, etc. Among other things they were asked what they thought the survival was for in-hospital arrests; they were then told it was about 15% survival to discharge and were asked if that changed their preferences for wanting CPR, etc.

Patients had very poor understanding of CPR and its outcomes. About 30% of patients recalled having a discussion about code status during the hospitalization. Most patients noted that they thought they knew what CPR meant and entailed. 68% knew it meant chest compressions however only 27% knew it could involve defibrillation and only 7% mechanical ventilation. About 90% of patients (including the oldest group) said they would want all 3 (of note when they describe the situation they describe it as one in which 'you are dying').

Overall patients estimated survival to discharge after an in-hospital arrest to be 60%. After being told actual expected survival is about 15%, 9 patients said they were less interested in CPR. After being told expected survival to discharge with 'good brain function' was about 7%, 25 patients said they were less interested in receiving CPR.

8% of patients had code statuses which did not reflect their stated preferences; 2/3 of whom were 'full code' and didn't want to be. They noted that over 80% of patients said they thought it was good to talk about CPR outcomes. Only a few percent said talking about CPR made them uncomfortable. About a quarter of patients said they had living wills/advance directives; less than 5% of patients had them in their chart.

While they did collect data about physician estimation of prognosis, they do not mention if they compared that with patient preferences or anything else.

This is another solid reminder of how little patients actually understand about CPR - both its 'methods' and outcomes, and that we should take nothing for granted when discussing it. It also indicates that discussion of outcomes does change some patients minds, although a relatively small percent overall (fewer than this landmark study, although that one involved a much older patient population, and asked questions in the context of a patient's long-term survival as well). The fact that these were young and relatively 'healthy' patients probably is what leads to these results, especially compared to the older study: if you are 48 years old, expecting another 20-40 years of life, a 15% chance sounds pretty good. If you have a progressive, life-limiting disease, with a short overall survival (e.g. likely less than a year) the benefit:burden profile looks much different (aside from the reality that in those patients 15% is probably a generous figure).

Dr. David Weissman (the founder of the program I'm at) is tweeting an account of his work-week on a palliative care consultation service. He started yesterday, and is mincing no words.

His Twitter profile name is dweissma.

• Hope/faith (trying to maintain a positive attitude in the face of an admittedly poor prognosis).
  
• Denial (due to lack of understanding about prognosis and/or reaching a different conclusion than the health care team about prognosis).
• Let's further parse out the "reaching a different conclusion about prognosis" etiology: This could be related to past family experience where the patient or another loved one made a seemingly miraculous recovery, but could also be related to mistrust of the health care team.
• A mechanism of control for family in the face of anger, disappointment, or frustration over some aspect of care.

Hopefully, in the process of an organized family meeting, emotions such as anger (and their root cause) will be identified and acknowledged in the process of eliciting family concerns, perhaps even before the family expresses hope for a miracle. I had not previously considered these emotions (directed at the care providers) to be a cause for a miracle statement. In fact, based on my observations in the ICU, families who seem to clearly understand the poor prognosis and who don't expect a miracle seem more likely to express anger about the potential of mismanagement, late diagnosis, etc. (In other words, "we know what's going on, it's awful, and right now we need someone or something to blame because it's so awful" regardless of actual fault.) This is by no means a general rule and not based on any research--I can certainly recall families who have expressed both anger and hope for a miracle. Furthermore, these negative emotions in general (even when not directed at anyone in particular) are a likely prompt for a miracle statement.

The initial inclination for many practitioners is to tackle the miracle statement on an intellectual level, refuting the possibility of a miracle. The author correctly recommends clinicians avoid this approach. As he states, this approach will only alienate families. Why? Besides being a generally adversarial approach, it does not deal with the emotions underpinning the miracle statement. Families expressing hope for miracles in dire circumstances are not making an intellectual argument to begin with. The author gives some good suggestions for responding to miracle statements. His recommendations include (with some examples and comments from me):

• Ask family what a miracle means to them (i.e. what it might look like).
• Emphasize non-abandonment (which speaks to yet another item in the differential--fear of abandonment if goals of care are shifted towards comfort).
• Reframe the manifestation of miracles (i.e."miracles come in all shapes and sizes"). Better yet, try to have the family reframe the manifestation of miracles (e.g. "While we all hope for the miracle of recovery, are there other miracles you hope for or have already witnessed?)
• Suggest that if a miracle occurs, the physicians will do nothing to prevent it. (Perhaps it's better to phrase this in a more positive light and combine it with the statement of non-abandonment, such as "We will continue to monitor your loved one very closely and reevaluate his situation on a regular basis. Should a miracle occur, we will certainly embrace it and see where it takes us." For example, reassuring a family member if a loved one miraculously "woke up" after a severe anoxic brain injury, the medical team would
  certainly entertain changing the code status back to full code.)
• Cite professional obligations to honor the patient's preference, or when that preference isn't clear, to act in the patient's best interest.
  

The article acknowledges some of these scenarios will lead to an impasse in decision-making. The suggestions provided should help to avoid this, but sometimes it's inevitable. A tincture of time can be helpful, too.

2) The second article is a general review of spirituality and religion in clinical care by Dr. Dan Sulmasy. It also addresses the issue of miracles both directly and tangentially:

Scientific medicine made it possible to reconcile belief in God as healer with the practice of medicine by physicians through an understanding of God as the inspiration and source for the physician's knowledge, and as the Creator of the world's healing resources, such as medicinal herbs (Sirach [Ben Sira] 38:1-15).

I define spirituality as the ways in which a person habitually conducts his or her life in relationship to the question of transcendence. A religion, by contrast, is a set of beliefs, texts, rituals, and other practices that a particular community shares regarding its relationship with the transcendent. Spirituality is thus simultaneously a broader concept than religion and a narrower concept than religion. It is broader in the sense that all religious and even nonreligious persons confront the question of transcendence, and so the term is compatible with all forms of religious belief and even the rejection of religion. Spirituality is narrower than religion, however, in the sense that, because only persons can engage questions of transcendence, each relationship with the transcendent will always be unique and spirituality ultimately personal. Even within a given religion, there will be as many spiritualities as there are individuals.

I tried writing this post ten different ways, but I just could not get the introduction to sound right. So I'll just say it now: I am taking a two month sabbatical from Pallimed. I have no plans to quit the blog, but a wonderful opportunity came along that will consume a lot of my time over the next few months and I didn't want to 'phone it in' here. With Lyle, Drew and Tom writing you shouldn't notice a big change in the posts.

It was a hard decision to make, but between my paying job at Kansas City Hospice and my family and this blog, taking a break from Pallimed was the obvious decision.

If you are curious what I am up to it may not be hard to guess, especially with all the talking about social media I have done in the last few months. I decided to start a social media marketing consulting business called KLX Media. It's just a side project, but I want to start it off right. Thanks for all your comments on my posts over the last few years. I hope to come back fresh in a few months with a lot of great stuff to write about.

The National Alliance for Hospice Access issued a press release and data analysis regarding appropriate access to hospice. This is a significant issue for members of the NAHA because they are supporting reform to the current Aggregate Medicare Hospice Cap in addition to other reforms. The NAHA has voiced displeasure with lack of support from the NHPCO on NAHA positions. A more detailed comparison of the NAHA report to the NHPCO report may show some differences some may find compelling to change their mind and support the NAHA Cap Reform position.

Image by Daniele Sartori via Flickr

• 4 out of 10 hospice patients got no more than 10 days of care
• Only 16% of hospice patients get 60 to 180 hospice days, the range that improves quality and costs
• Minority access to hospice care trails access for whites by 25%

Image by .m.e.c. via Flickr

I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear. I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. What I am grateful for is the gift of intelligence, and for life, love, wonder, and laughter.

I have no quarrel with what anyone else subscribes to; everyone deals with these things in his own way, and I have no truths to impart.
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What I expect will most probably happen is that my body will fail, my mind will cease to function, and that will be that. My genes will not live on, because I have had no children. Perhaps I have been infertile. If I discover that somewhere along the way I conceived a child, let that child step forward and he or she will behold a happy man. Through my wife, I have had stepchildren and grandchildren, and I love them unconditionally, which is the only kind of love worth bothering with.
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In a moment or a few years, maybe several, I will encounter what Henry James called, on his deathbed, "the Distinguished Thing." I may not be conscious of the moment of passing. I have already been declared dead. It wasn't so bad.

Edgar Allen Poe, Dylan Thomas, Walt Whitman, Vincent Van Gogh, Albert Camus, Thomas Wolfe, Cormac McCarthy, William Shakespeare, Saul Bellow, Brendan Behan, Henry James, Herge, e.e. cummings, Matthew Arnold, WB Yeats, Theodore Roethke, and DH Lawrence.