Caring and tube-feeding

The Journal of the American Medical Directors Association has a paper discussing tube feeding in advanced dementia, and why the practice still continues despite lack of evidence that it is medically helpful. The discussion is really about the nature of caring, what it means for families to care for a beloved family member with dementia, and how tube feeding interacts with that. This is one of the best discussions of the emotional landscape of the issue that I've read, and the crux of their argument is as follows:

But perhaps one overlooked reason that many loving families and caring physicians continue to opt for artificial nutrition is that the case for feeding tubes is a moral one and not a scientific one. Clinical experience suggests that family members who express concern about “starving” their relatives to death may not be asking for more data. They may not be interested in the relative merits of randomized versus observational studies. They are unlikely to be persuaded by claims that feeding tubes not only fail to prolong life but also are ineffective in preventing aspiration pneumonia or pressure ulcers. These medical outcomes, which can be scientifically measured, are of interest to physicians; it is not at all clear that they are important to families. From this perspective, families will derive little reassurance from a new, better designed study or a multipronged intervention that simultaneously addresses each of the factors that has a small but statistically significant effect on PEG usage. What may be at issue for families is how best to demonstrate caring, and caring is not readily amenable to empirical study.

Another great line: "Moreover, if a carefully conducted study definitively demonstrated that hugging has no effect on the immune system, no daughter would stop hugging her demented mother."

This reality, of course, does not provide a 'way out,' and the authors suggest the only ways out would be well-designed studies showing harm from tube feeding patients with severe dementia and dysphagia and/or poor oral intake, or another way of showing caring with nutrition (they mention Ensure lollipops - I wasn't sure if this was some sort of joke but I'm assuming it wasn't - does anyone know of work being done on such a thing?). Diligent hand-feeding is of course perfectly within the framework of 'caring with nutrition' here, and the authors discuss that as well as some of the barriers to that being used/proposed more.

An International Review of Hastened Death

(Hopefully not a recurring feature)
*Please read disclaimer at the end of post*

The New York Times #6 most emailed article today is about the underground practice of hastened death via the procurement of barbiturates in Tijuana, where the medications are intended for euthanizing animals, not humans. It is interesting this practice fits under neither commonly used terms for hastened death by medical means:

"euthanasia" - the administration by a medical professional (or other person) of a prescribed medication with the intent of causing a hastened death

"physician-assisted suicide" - the self-administration of a medication prescribed by a physician with the intent of causing a hastened death

This article describes people obtaining the medication without a doctor's prescription, therefore 'physician-assisted' is a disqualified descriptive. They merely need to show a picture of the medication they want at the Mexican veterinary stores. So I guess this is simply 'suicide?' Although I think 'suicide' is too broad to define the particulars about a situation where someone is in the terminal phase of a condition versus someone suffering from a severe depression but no terminal illness. But to label this 'terminal suicide', 'hastened death in the terminal phase' or some other contortion feels clumsy and is bound to cause even more confusion.

Regardless of the term used, the issue has been made more relevant with a couple high profile cases of medicine and hastened death.
In Australia, Exit International and Philip Nitschke have been making the papers and TV (and are featured in the NYT article) with a public campaign to legalize euthanasia including You Tube Videos, film screenings, book promotions (attempts at banning it are underway in Australia and New Zealand), workshops and political initiatives. More focus has been on Mr. Nitschke and his group since the recent manslaughter conviction of a woman who gave a barbiturate to her partner who had Alzheimer's. Another recent case is also being featured of a woman who was depressed but not terminally ill who supposedly relied on information form Exit International's materials to kill herself.
In Germany, a lawyer/politician advised, and videotaped a 79 year old woman who prepared and self-administered a 'lethal cocktail.' The woman was not terminally ill but chose hastened death because she did not want to go to a nursing home. The politician, Roger Kusch, was inspired by Dignitas, a pro-euthanasia organization based in Switzerland who has many people from Germany requesting its services.
In Scotland, a Member of Scottish Parliament, Margo MacDonald has filmed a documentary with the BBC and proposed legislation to adopt the euthanasia and assisted suicide laws similar to The Netherlands.
In Italy, a case eerily similar to Terri Schiavo and Nancy Cruzan is being discussed publicly and was recently covered in TIME magazine. A 20-year old woman in a car accident (in 1992) now comatose and with a feeding tube that her father wants to have removed (and has fought for since 1999) was allowed by Italian courts to stop her artificial nutrition via feeding tube despite much opposition. The case is now pending appeal despite already having gone to the Italian Supreme Court in 2002.
In Canada, Samuel Golubchuk, an 84 year old man whose family fought hard to continue aggressive life-prolonging measures died 9 months after doctors initiated discussions about end-of-life decisions. He died on full life support measures. If his life support was withdrawn it would have been illegal since a court ordered physicians and the hospital to continue partly based on the family's belief of hastening his death would be a sin under Orthodox Jewish law. The case was to be heard by a full court in September. Doctors refused to care for him, likening his medical treatment to 'torture.'In England, a man who was refused Sutent, a prostate cancer drug, by the National Health Service suffocated himself.

So why is this all important to palliative care?
Because guess who thinks about these things:

• your patients
• their families
• medical professionals who consult you
• the public

and they may never bring it up with you for a multitude of reasons. Or they may hint at hastened death, but never start an open discussion. Or they may make a sly joke about it, waiting to see how you respond. Or they may assume what is good standard palliative care is really euthanasia.

Good hospice and palliative care practices can help people discover hastened death does not have to be the easy way out. If the lines are too blurred between the legal and illegal our field has significant trust to lose with the public and our peers. Being educated and aware of the public debate over hastened death is a responsibility for palliative medicine to ensure the safe, ethical, and legal care of the patients and families entrusted to us.

(My Standard Disclaimer: Pallimed, Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine. Links do not represent endorsement.)

Pediatric palliative care; 'Continuous deep sedation'

1)
Lancet has a fantastic article about pediatric palliative care. It's both a general overview of the field as well as a lively discussion of the Big Issues in pediatric palliative care (pretty much all of which will be familiar to practitioners of adult palliative care). It has case discussions involving concurrent palliative & curative therapy, palliative care for terminal illnesses which go on for years, cultural issues, suffering, hope, international issues, etc. You can tell I really liked it. Also, some sanity about 'denial,' probably one of the most over-used labels we (medical people, not necessarily palliative care people) apply to our sick patients:

Adults aware of their impending death might maintain hope by shifting from a hope for cure to hope for what they define as a good death (eg, as pain free and comfortable as possible) and with a focus on leaving a legacy. How to support hope for children with life-threatening illness is less clear. An additional challenge is the struggle for parents and other loved ones to maintain hope. What remains unexamined is the role of “healthy denial” in maintaining hope for cure despite a very poor prognosis. It is possible that for some children and parents “unrealistic hope” in the face of overwhelming disease is a functional coping mechanism that does not necessarily signify pathological denial. At times, people might hold beliefs that although seemingly discordant with each other (eg, the knowledge that one is about to die at the same time as maintaining hope for a last-minute reprieve from death) could instead represent healthy coping.

The same issue also has a review of cirrhosis with some good general info on general prognosis (although nothing much beyond this Fast Fact), prognosis after transplantation, and up-&-coming therapies (?maybe) aimed at directly slowing/reversing liver fibrosis. Interesting stuff, but nothing about supportive care.

2)
Archives of Internal Medicine has a couple.

First is an attempt of sorts to validate an anticholinergic risk scale. The ARS was developed to try to quantify how likely a certain drug is to cause anticholinergic side effects (falls, dizziness, confusion, dry mouth, constipation, dry eyes, etc.). The scale gives a drug a 0-3 (none to severe) score for likelihood of causing anticholinergic side effects and then a patient is given a risk score which is the sum of their individual drugs risk sub-scores (2+3+3 = 8 - this would be for a patient on one moderate risk and 2 severe risk anticholinergic drugs). This study attempts to validate the ARS (which was developed relatively empirically based on pharmacologic know-how) in a geriatric population (geriatric clinic patients) by looking at risk scores with actual symptoms and comparing geriatric patients with general primary care clinic patients (on the assumption that older patients are more likely to suffer anticholinergic toxicities). Essentially they found that the AR scale & score were decently predictive of toxicities, particularly in the elderly, and they conclude that the ARS is a reasonable way of identifying high-risk patients. (There is a table with the risk scale as part of the article).

The other paper is about 'delicate' issues surrounding 'continuous deep sedation' (also variably known as terminal or palliative sedation) in the Netherlands. It is based on a survey (36% response rate) of Dutch physicians, and much of the context of the study involves the fact that these physicians have euthanasia as an option for them as well as terminal sedation. I'll only comment on a couple findings. First is that these physicians overwhelmingly differentiated between TS and euthanasia, apparently largely due to intentionality - their intention with providing deep sedation was to alleviate symptoms as opposed to bringing about death in euthanasia. The other point is that the use of TS exclusively for non-physical symptoms (i.e. existential suffering) was relatively rare (~8% overall - rates are much higher than this for euthanasia). My overall gloss on this (and this is not the first bit of research out of the Netherlands to suggest this) is that - even in a setting where both practices are available - TS and euthanasia are conceived of differently by practitioners, and used differently for different situations/patients.

3)
Coincidentally, BMJ has a paper (again a survey) describing the epidemiology of the use of CDS in the Netherlands: how often, what reasons, use of artificial fluids/food, etc. Most physicians (again, this is all based on physician retrospective reporting) felt that it either didn't shorten life or did so on the order of less than a week. The one interesting bit here, and perhaps one that contradicts my earlier pontificating, is that rates of euthanasia are declining in the Netherlands whereas the percentage of people who die while receiving CDS is increasing which makes one wonder if one is being substituted for another...?

The accompanying editorial's subtitle is also worth mentioning: "Imprecise taxonomy makes interpreting trends difficult" and discusses the ongoing struggle involving language (TS vs PS vs CDS, etc.).

4)
Mayo Clinic Proceedings has two reviews. One is a discussion of informed consent - quite legalistic but a good basic review of the topic, its history, etc. The last section discusses autonomy and how patients actually want decisions made and I enjoyed this line: "Responsibility for medical care has landed on the shoulders of patients with a resounding thud."

The second is a review of small cell lung cancer. Picking up our on & off again habit of noting whether supportive care is mentioned in review articles of nasty, nearly uniformly terminal illnesses I'll point out that, in fact, there was no mention of anything like that.

5)
JCO has a really compelling reflective piece on death & blame. It starts off about patients/families blaming someone (oncologists, etc.) for the fact that treatment often doesn't work and then goes into a discussion about the place of death in our culture - is death fundamentally a wrong (in a deep moral and spiritual sense) or not? The problem is of course one can deeply believe that death is not wrong but that doesn't mean that 1) your patients agree, and 2) it doesn't deeply suck (hurts on the inside & the outside so to speak) anyway (to quote Christian quoting me - see the last post).

6)
Age & Aging has a study about a prognostic index for determining 4-year mortality for the elderly. It's based on prospectively gathered data on ~1000 patients from a single region in Italy and uses relatively easily obtainable data (could be obtained from a single office visit). Patients in the highest risk group had a 78% 4-year mortality - although it needs to be noted that only a very few patients fit into this group and so it becomes very difficult to interpret its validity. Indices like this are helpful in two ways: 1) as a research tool (risk stratifying subjects, etc.), and 2) to identify patients with more urgent indications for advance care planning, etc. What's unclear is if they offer anything further (clinically) than reinforcing the maxim that 'sick people are sick.' Thanks to Dr. Bob Arnold for alerting us to this.

7)
Finally, and don't call me crazy for noting this, JAMA has a primer about interpreting large genomic studies. It's likely that at least my generation will be faced with actually clinically useful genomic studies (about predicting efficacy/toxicities of opioids and other meds at the very least) and knowing what to make of these studies will be an important skill.

Cachexia Conference Review; Pal-pourri

I just came home from the 4th Cachexia conference in St. Petersburg, FL. This conference originated in Berlin, and this is the first time it has been hosted in the United States. The primary focus is basic science but the conference had a clinical track, which from prior participants sounds like it is becoming more significant. The speakers and attendees are mostly from Germany, Italy, Japan, and Australia, as well as the US, so this conference surely has an international flair. One great comment I heard from a German physician, after I introduced myself as a palliative care physician was, "Oh. You are finally doing that here in America. I didn't think that was something that had really caught on over hear yet." I heard something similar from a British scientist as well.

While we have been rather pessimistic about treatment of cachexia here at Pallimed, the conference speakers and attendees were are very hopeful about the future of cachexia research and treatment opportunities. It was enlightening to speak to scientists working with animal models of cachexia to give them some insight in how clinicians see (or really don't see) cachexia as part of the disease process in humans.

Approximately 300 attendees were present for the first plenary session which featured some of the leaders in cachexia research: John Morley (St. Louis, USA), Bill Evans (Little Rock, USA), Stefan Anker (Berlin, GER) and Giovanni Mantovani (Cagliari, ITA). Most of the initial lectures focused on the dilemma of definitions and differentiating cachexia from anorexia, sarcopenia, starvation. But despite that attempt at clarification there was still some overlapping definitions among all the speakers later in the conference.

Apparently, only recently has there been some effort to have a consensus statement on defining cachexia. There was even a push at one time to rename cachexia as 'wasting disease syndrome' to be more appealing to Americans. Thankfully that did not win out, since cachexia is a perfectly workable word. It even has an 'x' in it like most popular brand medications, so you think that would help.

While no major breakthroughs in clinical treatment were presented, the conference did help me to really understand how really complex a problem cachexia is, and how knowing this may assist may explanation to families, patients, and medical staff, that it is not as simple as just improving the calorie balance. I am hopeful to see more talks at upcoming palliative care meetings on cachexia. Christine Ritchie and Elizabeth Kvale from University of Alabama Birmingham Center for Palliative Care were also at the meeting to get ideas for their cachexia clinic (a part of their palliative care clinic). They may be good contacts if any readers are looking at working this model into your program or even joining them at UAB.Don't forget about the Pallimed Fund Raiser for donorschoose.org, and the contest for HPCF-USA and the Pallimed coffee mugs.

Maurice Bernstein, MD at the Bioethics Discussion Blog brings up the common medical shortcut of referring to patients by their age/sex/room/diagnosis instead of their name and who they are as a person. For suggestions on how to help teach humanism in medicine check out his blog.

A report about deaths increasing from methadone use was released last week. We may feature this issue in an upcoming post.

Blogger Ed Leap with a interesting post on CPR. Could continuing CPR serve for purposes more than just prolonging life?

Photo of the Sunshine Skyway Bridge over Tampa Bay courtesy of Flickr user .Zickie.

Dementia & eating; Pessimistic prognosis in COPD; PAS in NYT; More

1)
A couple notable reviews, both ones for the teaching file:

First is one in JAMA on dementia and eating problems (from their 'Clinicians' Corner' series). It uses a case of a man with advanced dementia and poor oral intake to discuss palliative care in dementia, focusing on the problems with oral intake, lack of data to support tube feeding, problems with communication about tube feeding, etc. Part of the 'Clinician's Corner' style is to have Q&A and I found this bit from the end as to why even tube feeding is brought out as an option to be interesting (even when the clinician has no intention of recommending it...it's as if it's considered a standard of care [demented, don't eat well --> gastrostomy] that has to be acknowledged):

"QUESTION: I wonder if you could reflect for a moment on what I see as a big failure in US medicine. One of the things we are supposed to do as physicians is present options. But with everything we know about this situation, why in the world would we be presenting tube feeding as an option to a patient like Mr P?

DR MITCHELL: In my personal practice, I don't introduce the option of tube feeding for a patient with advanced dementia, unless the health care proxy specifically brings it up as a possibility. However, once the option of tube feeding is raised, physicians must be prepared to counsel the family through the decision-making process.

On a broader level, there are several possible reasons why tube feeding remains an option that is commonly presented to patients with end-stage dementia in the US health care system. These reasons include the strong symbolic significance of feeding, an emphasis on individual autonomy in medical decision making, the wide availability of medical technology, discontinuity across health care settings, fear of litigation, and health care policies that may facilitate curative treatments over palliation. Of note, tube feeding in advanced dementia is less common in other developed countries (eg, Canada), where different health systems and cultural attitudes toward death and dying may facilitate a greater willingness to forgo aggressive end-of-life interventions."

Damn those reasonable Canadians once again. (Canadian readers: is this true?) Anyway, the subject which I was hoping would be brought up, which a bright resident asked me the other day after talking about this topic, is Why even get swallow studies on this patient population? I told him it was a great question, and there are certainly reasons to do it (defining a diet that doesn't make you have a coughing fit every time you eat is a good quality of life intervention), but the knee-jerk leap to doing a swallow study (leading to an NPO recommendation --> hour long conversation with family about how you think we should ignore the NPO recommendation) is in no one's best interests. I'm looking for a reference that talks about this topic, and this wasn't it, which is OK, since I doubt it was written with my idiosyncratic didactic needs in mind, but if anyone knows of one, please leave a comment.

The other is from the NEJM and is about the management of depression in the elderly. It's practical and general review and quite positive about ECT for refractory depression. It had this interesting nugget:

"However, a recent study suggests that a full response [from first line pharmacotherapy] is expected in two thirds of patients who have partial improvement after 4 weeks of treatment, as compared with about one third of patients without a response at 4 weeks. Even under the best of circumstances, only 40 to 65% of patients have an adequate response to any given antidepressant, and trials of alternative antidepressants or combinations of antidepressants, with or without psychotherapy, are required in a substantial number of patients."

2)
BMJ recently had a research letter about overly-pessimistic prognostication, by physicians, for COPD & asthma patients being admitted to ICUs in the UK. It involved ~800 patients (over 45 years old) being admitted to numerous UK ICUs for exacerbations of obstructive lung disease (some had asthma); their physicians were asked to predict their ICU, in-hospital, and 180 day mortality. This is a relatively brief letter, and the results weren't given in great detail, but the overall results were that physicians were overly-pessimistic. Overall survival was 80% ICU, 70% hospital, and 62% at 180 days. There is a figure that graphs actual with predicted survival which is tough to summarize in words other than to say predictions were consistently pessimistic and particularly so for the patients at highest risk of death (predicted 180 day survival 3% - actual was 36%).

Much of the discussion of the paper (including in this accompanying editorial) has to do with UK-specific concerns with ICU bed shortages, etc. While I'm sure the findings are valid, one also has to wonder what they actually mean. These were patients, after all, that these same pessimistic clinicians were transferring to an ICU despite their pessimism, so it wasn't actually changing their care, at least as far as that goes. What is the survival of patients who weren't admitted to the ICU (due to poor prognosis, and how would one even begin to ethically identify those patients for a research study?)?

Anyway, a tantalizing bit of research and one that highlights the perils of prognosticating time in patients with COPD. Where to begin? No robust, evidence based method of predicting prognosis with precision greater than a year or two. For patients hospitalized with COPD we have pretty good ways of saying who are almost certainly going to survive, and who are at relative high risk of death, but still for those it's pretty much a coin toss. Physicians making decisions about COPD patients prognosis and care are, at least in the hospital, seeing these patients at their absolute worst/sickest, and while COPD is an unrelentingly progressive disease, and when people get sick they can really get sick, they also often recover a substantial amount. That's why, to me, it seems making these sorts of predictions is a losing battle, and decisions about 'aggressiveness' of care shouldn't be made (usually) because we are confident that, for instance, intubation isn't going to help but for other reasons (such as the patient's baseline status, perceptions of quality of life, and goals; e.g. the patient who says 'if all intubation is going to do is potentially restore me to being nearly bedbound then I'd rather not come into the hospital at all'). I hope to be proved wrong, but I think COPD is, by its nature, inherently unpredictable (unlike, relatively speaking, many cancers), and decision-making should be based things other than a confident prediction of time. Where this leaves our hospice colleagues is another question....

Thanks to Dr. Bob Arnold for alerting us to this paper.

3)
The NY Times Sunday Magazine this week has a feature on assisted suicide. It's mostly a broad look at it through a handful of personal stories (the major one involves a former governor of Washington state who has Parkinson's and is campaigning for a PAS law). The focus is, interestingly, the non-"pro-life" arguments against assisted death - focusing on concerns about the disabled, those without insurance, women, the most vulnerable. So the 'slippery slope' arguments - not the it's wrong/life is precious at all costs arguments. The article mentions that in Oregon there has been zero evidence to suggest that those groups (the vulnerable) are being disproportionately affected by PAS but then goes onto to treat these as major concerns - it's rhetorically dishonest in my opinion with the way it treats the research findings (acts like they are real problems when they aren't). I'm no fan of PAS, but I think we have to be honest about what has happened with it in Oregon: it's hardly been used, it has not been used disproportionately by the vulnerable, and the concern that PAS was going to be heaped upon the poor, the disabled, etc. just has not panned out. One assumes this is because the Oregon model is, by design, patient-driven - and concerns that docs, insurers, etc. would suggest to people that their lives weren't worth living, and the patients themselves would go "You know, you're right, can I have some of that PAS?" just haven't come to pass, for obvious reasons. There a reasons to object to legalizing PAS but the slippery slope concerns shouldn't be part of it (at least based on the Oregon experience).

The article is also a premiere example of why some/most are interested in PAS: it's not because of actual physical suffering/pain, but because of perceived future pain/suffering/loss of control & lack of finding meaning in the inevitable disability, dependency, and contraction involved in dying. "My life, my death" - that sort of conception of dying....

Heated Criticism of Living Wills Spills Over

The Washington Post published an editorial on the drawbacks of living wills as powerful agents in advanced care planning. Well at least that is how the article started. The author of the piece, Charlotte Allen,was recently diagnosed with breast cancer, luckily caught in the early stages. The frustration of the piece stems from the omnipresent questions about living wills.

"Do you have a living will and if not would you like more information on them?"

She felt "ever-so-slightly harassed" and imposed on by the frequency and style in which these questions were asked. So much so that she took these questions to come up with a conspiracy theory. The medical establishment and secular elitists want you to die. Now if you have read this post this far, I highly recommend you go read the primary article, because I am not going to re-hash it line by line here (see the end of this post for that). I do not recommend it as a fine piece of well-founded opinion writing, but I do recommend reading this piece, because I think this article represents a sizable minority view that is important for the medical field and palliative care especially to recognize.

In my early training in hospice and palliative care, I was excited by this new approach to medicine. Spending time talking with the patients and families, openly discussing difficult life and death topics with them so they could make the decisions that were in their best interest; these actions were very rewarding. But I did go through a brief militant hospice phase, where I thought hospice was 'right' for everyone, I just had to help them understand that. So I can see where Ms. Allen may see some of this over-bearing "accept death already, would ya?" style. From talking with more patients and families, I soon learned that hospice was not right for everyone. Some people need to fight to the very end. That is a good death for them. But because some want to treat to the end, it does not mean medicine has a death-wish for patients when we address end-of-life issues.

She impedes the full impact of this rhetorical exercise with the use of unnecessary pejorative words, broad generalizations, unfounded accusations, and setting up an artificial us against them divide. Readers familiar with Pallimed will know that we have outlined some of the limits of living wills, and surrogate decision making, so in part I agree with some of the points that Ms. Allen attempts to make. I just wish she did so in a much more factual way without using fear and smear tactics.

If you are really interested, I encourage you to read some of the entertaining 9+ pages of comments and the transcripts of a Q&A (much shorter than the comments). Most of the comments seem to oppose most of her points which I was glad to see that the readers of the Washington Post seemed to be well-informed. Most of the people who did agree with her broader accusations tended to side with her on opposing the outcome and decision making process of the Schiavo case.


----------------------
Some point by point issues with the article. This is kind of long. Well really long.

Use of fear as a anti-establishment tactic.

• I found something weasely...
• I've developed a sneaking suspicion that someone else may be hoping to call the shots
• "dying when we, the intellectual elite, think it is appropriate for you to die."

Who are the intellectual elite? Classic 'us vs. them' technique that leads to conspiracy theories. She answers later in the transcript that she defines the intellectual elite as: "Great minds at our universities and media."

• with the growing acceptance of such notions as physician-assisted suicide

See Drew's last post on public misperception on what euthanasia means. Polls on public acceptance of PAS vary widely and there has been no real trend in either direction that is well-established. Voter approval in one state 10 years ago, and with multiple failed attempts since then in other states, hardly makes the case for a growing approval.

• Many people, especially highly educated, nonreligious people, think that "physician-assisted death" is exactly the right way to go -- or to send off your unconscious mother.

What this has to do with highly educated or nonreligious people is unclear. It seems to be a dividing technique again, especially when "they" are thinking about doing this to Mom!

• American Academy of Hospice and Palliative Medicine reversed its long-standing opposition to physician-assisted suicide

A careful reading of this statement demonstrates that every attempt should be made to avoid PAS/PAD. And the Academy did not reverse its opposition, it has a position of studied neutrality. Reversal would be an endorsement, which this is not. Most of this I see comes from the fact that you have a national organization has to provide guidance to professionals in Oregon (legal PAS) and in other states (illegal PAS). There is research to show that PAS happens regardless of legality, but adhering to state laws or working to change them should be the approach to take if you do not like the way things are now.

• Have your doctor pull out your feeding tube or inject you with cyanide or do whatever fulfills your idea of death with dignity.

Now come on..."inject with cyanide?" That is really confusing the picture and equating that with stopping tube feeding is way too blunt for such a complex subject.
Misperceptions of medical language/approach.

• ...whether I would want to be denied "artificial" food and water...

Nutrition by mouth is considered natural. By other routes is artificial (feeding tube, IV, etc). Artificial nutrition is not inherently endowed as good. It must be used appropriately.

• ...being given 30 seconds in a busy lobby to read and sign a complex document...

True this is how the process starts, but quality medical establishments should take the time to address these with you after you have had time to review them. One should avoid making these decisions in haste or in a crisis when possible.

• ..."right to die"...
  

An ambiguous term at best. It is really more of a wastebasket term to lump subtle and complex ethical issues. It is difficult to throw this term out in the open without really defining it for the reader as to the author's understanding.

• Equating "good death/dying well" with the word euthanasia

These words all have very open meanings that have different understandings depending on circumstance and understanding. Good, death, dying, well are all common words with some overlapping themes. To suggest this is the secret medical code for 'hastened death' is disingenuous.

• "Then, what you have to do is take him to a hospice. That's what we did with my mother. They'll put him on a morphine drip, and he'll be gone in a few days. They know what to do."

Her first hand experience with hospice care is tainted by a strangers comments that could be interpreted in many different ways. Good hospice care may involve morphine drips, but the majority of hospice care does not need this measure to provide comfort. The rule should be the right dose for the symptom. Besides no one ever notes the fact that hospices have a financial disincentive to hasten death, they are often paid per diem. And I have had many, many patients live well and long on opioid drips.

• terminal sedation
  

Misperceived as sedating and then stopping food and fluids, when in fact most studies demonstrate that when this is enacted, the patient has often already stopped eating and drinking on their own.

• It's not surprising that many people have reservations about theories of "dying well" that always seem to involve not staying alive...only 18 percent of Americans of all races had them...

She again uses the possibility of the public reacting against the establishment as the potential reason for not having living wills. The most common reason I encounter in my practice: No one likes to talk/think/discuss end-of-life issues. That is a pretty obvious one.

The opinion piece's good points.

Many people do not have living wills. So let us better understand the barriers and help them pick a decision making process that is right for them.

Impotency of living wills. The process to make them and keep them up to date and readily available is a systems issue not a failure of the idea of a living will. Often the language is ambiguous, and the form is not updated frequently. POLST may be a way to fix some of these issues, but I am sure Ms. Allen would find some objections to that.

Living wills seem to only indicate what you don't want. That is true but that is a reaction to the perceived over-treatment by the medical system and how living wills were hatched in the first place. But there is no reason why a living will cannot say that your preferences are to be as aggressive as possible and to stop asking me about death and dying.
DPOA's are good things to have. They allow flexibility, but they also have limits and fallibilities that Ms. Allen neglects to highlight. Often they are signed without the most important discussion about wishes. Even when that happens surrogates may make different decisions.

She did not use the word narcotic. Pet peeve of mine.

I just want to die in peace. I think most people would agree with that. And that is what palliative care is about. Meeting you where you are at.

Picture Credit: Christian Sinclair, UC San Diego, "Bear"

Vatican & tube feeding; More on Abigail; Nausea review in JAMA

I apologize for the scarcity of posts this last week. It sort of feels like 'school's back in session' here and things have gone nuts. I'm going to quickly post a few things here and hopefully will get to some more on the weekend.

1)
A NY Times blog recently posted about the Vatican's new statement on tube feeding for people in persistent vegetative states:

“A patient in a ‘permanent vegetative state’ is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.”

My question is since we're all people with fundamental human dignity shouldn't we all then 'receive...water and food even by artificial means." Even if we're not in a PVS and don't want it? Because if someone in a PVS has to get it then surely we all do? For example - if we have an inoperable malignant bowel obstruction and don't want our dying process prolonged artificially do we have to still (if we are to abide the Vatican's statement) receive TPN? (Assuming we are one of the few percent of patients whose lives are likely to be prolonged by TPN in this case.)

(Thanks to Dr. Paul McIntyre for letting me know about this.)
(NY Times articles are now free, all free, all the way back to 1987!)

2)
BMJ recently published a 'head to head' about whether terminally ill patients should have the right to experimental drugs? (Yes here; no here.) This is prompted by the Abigail ruling which we've blogged about a few times before (posts here): basically it's about a group's attempt to give terminally ill patients the right to experiemental drugs (ones that have passed phase I testing). Note: this is not about allowing them access to the drugs but a right to them. From the 'Pro' position:

"In summary, patients with advanced cancer and limited life expectancy should have the same privilege as all individuals in a free society—that is, to decide their own benefit:risk ratio. It is tragic that regulatory bodies have created a circumstance where people have to live in an aura of hopelessness even though they have the will, the resources, and the ability to expose themselves to the risk of participating in investigational studies and to enjoy the potential for benefit. The solution is legislation or judicial action to permit expanded access to experimental treatments for patients with limited life expectancy."

A couple things about this statement. First, note what they are actually arguing for is to 'permit expanded access' to these treatments. Liberalizing the rules about compassionate use of experimental cancer therapies is, in fact, a much different concept than giving people a positive right to them which is what the Abigail decision was about. The first statement - about patients deciding their their own risk:benefit ratio - also strikes me as a difficult one to swallow. Why not then let all patients decide on the risk:benefit ratio of all drugs and do away with the FDA, pharmacies, prescription drugs, and physicians altogether? After all, individuals in a free society should be able to read about the drugs themselves and make well informed decisions about using them, right, so why have all these intermediaries? And finally the statement about letting people live with an 'aura of hopelessness' by denying them the right to demand taking substances with unknown benefits/toxicities seems absurd. It is our obligation, as physicians, to provide the best medical care we can for patients - that's rooted in science, likely to help them more than harm them, and takes into account the patient's values and goals. We are not charged with the task of stamping out 'auras of hopelessness' or giving our patients everything they ask for like they're medical consumers...

(Annas' review of the matter in the NEJM is the best thing yet written about this.)

3)
JAMA is continuing their 'perspectives on care at the close of life' series with one on nausea and vomiting. It's a good review of the subject, and focuses particularly on nausea/vomiting in advanced cancer patients. It also gives what is probably the first mention of the widely-used, and controversial, ABHR gel in a major general medical journal:

"The ABHR suppository, a combination preparation of lorazepam (Ativan), diphenhydramine (Benadryl), haloperidol (Haldol), and metoclopramide (Reglan), is often used for home hospice patients, although there are no data to support its benefit. It is well tolerated, but, in our experience, exerts its effect mainly through sedation."

While I'm no proponent of ABHR gel (I'm agnostic about it despite the number of times trusted hospice nurses have sworn to me it is effective), it's unclear to me how something can be both well tolerated and effective mainly through sedation. Anyway, given its widespread use it would be interesting to see an efficacy trial of ABHR but who's going to fund that?

(Thanks to Dr. JP Pinzon for the heads up about the article.)
(The same issue has a follow-up to the perspectives piece about ALS.)