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.)

Morphine vs fentanyl vs methadone; More

Editor's note, evening of 4/23/08: my original post from yesterday went out garbled (a couple paragraphs were missing). I've fixed it as best I can (see the comments on this post). --Drew.

1)
The European Journal of Pain has a randomized trial comparing long acting morphine with transdermal fentanyl or methadone as the initial long-acting drug in cancer patients. This was a prospective, unblinded study of ~100 Italian cancer patients (mean age ~60 years) who had ongoing moderate to severe pain (mean baseline pain scores were 7/10) on weak opioids. (It's unclear what the baseline opioid use was in these subjects - without the paper explicitly saying so one has the impression that the group doing the study used a standard 'WHO Pain Ladder' protocol and these patients were ones who were having ongoing pain despite 'weak,' 'step 2,' opioids. Doses of at least 300mg of tramadol and 180mg a day of codeine were mentioned in the methods section.) They were randomized to 60 mg daily of morphine ER, 25 mcg/hr of TD fentanyl, or 5 mg q8hours of methadone (i.e. a methadone:morphine ratio of 1:4). Doses were then adjusted without any specific protocol (the group's own usual practice was used): for better or worse this study measures one center's 'real-life' experience after the randomization. Break through medication was morphine at about 1/6th of the 24 hour morphine equivalent dose of the long-acting med. Data were collected for a month. An 'intention to protocol' analysis was used: if you know what that means exactly please leave a comment - as far as I can tell it means an intention to treat analysis and they analyzed patients based on initial randomization even if their opioids were switched mid-study for clinical reasons. The study was powered to find a 30% difference in pain intensity.

Findings are easy to summarize:
All groups looked very similar throughout the four weeks (took 2-3 days for doses to stabilize; pain had reduced to the less than 4/10 level at week one and stayed there; side effects were similar). Fentanyl, which has found to be less constipating compared to long acting morphine in previous trials, was not found to be so in this one (although it wasn't necessarily powered to do this).

Two other findings to comment on. First the opioid escalation index was lowest for methadone (not surprising) but was highest for fentanyl (essentially those randomized to fentanyl needed a larger dose increase over the 4 weeks of the study compared to the others). The most obvious suggestion for this is that their chosen equivalent dose of fentanyl (25mcg/hr = 0.6mg fentanyl a day = 60 mg of morphine a day) was too low.

The other one is that these findings seemingly contradict another randomized trial comparing morphine ER with methadone as the initial long-acting opioid (which found that methadone was poorly tolerated compared with morphine and not a better analesic). That study used a methadone:morphine ratio of 1:2 to start off with, and was also starting patients on long-acting drugs relatively earlier - using 30 mg daily of oral morphine instead of 'waiting' until they needed 60 mg. It also used methadone as the break through drug in the methadone arm. These are sufficient differences to make comparison of the studies difficult. I have used the earlier article as a(nother)** reason not to use methadone as a first-line agent but the current study suggests that using this lower, initial ratio may improved methadone's tolerability as a first-line 'strong' opioid. I'm curious as to what others think of this.

**Other reasons for not using it as a first line drug: complex drug-drug interactions, QTc prolongation which is a particular concern in my patients with prolonged prognoses, complexities of transitioning someone off methadone onto another opioid if needed, ongoing lack of head-to-head evidence that it provides any clinical benefit over other opioids, and a general impression that the psychiatric side effects of methadone are worse than with other opioids (sleep disturbances, bad dreams, hallucinations). (That last point is completely a personal impression and not based in anything else.)

MERCADANTE, S., PORZIO, G., FERRERA, P., FULFARO, F., AIELLI, F., VERNA, L., VILLARI, P., FICORELLA, C., GEBBIA, V., RIINA, S. (2008). Sustained-release oral morphine versus transdermal fentanyl and oral methadone in cancer pain management. European Journal of Pain DOI: 10.1016/j.ejpain.2008.01.013

2)
Briefies:

a) The American Thoracic Society has released a policy statement on palliative and end-of-life care for patients with respiratory illnesses and in ICUs. Compared to a lot of society statements this one is somewhat of a tour-de-force in its scope and length - a good one for the teaching file. I loved these sentences:

'Families should be informed in advance of agonal breathing so they can view it is as a part of the dying process rather than a sign of patient discomfort. If one uses the term "agonal breathing," one should help the family to understand that it does not imply that the patient is in agony.'

They perhaps should have just recommended not to use the word 'agonal' in front of families altogether.

b) The latest issue of Journal of Clinical Ethics has a case discussion on Jewish law/ethics and artificial nutrition at the end of life (there are a handful of associated commentaries also - links to them are available from the PubMed citation linked-to above). This is the best commentary (from a medical perspective) on this that I've seen since I've been looking and is a good discussion of the issues involved, their history, and conflict resolution surrounding them.

c) Pain Medicine has a review about methadone's drug interactions. It's lengthy and the most comprehensive overview of the topic I've run across.

d) Pain has an editorial about efforts to get transmucosal fentanyl approved for 'breakthrough' pain for chronic non-malignant pain which is really an editorial about what is actually meant by breakthrough pain, and cautions against extrapolating from cancer pain research to CNMP.

e) BMJ has an article describing what the authors describe as the 'co-development' of palliative care and the right to euthanasia in Belgium, which is directed directly at those who worry that the growth of euthanasia would limit the development of palliative care. Their conclusion is that both 'movements' occurred together in Belgium and have shared some synergy (and common 'workers'):

Within Belgium we found few professional stances contending that palliative care and legalisation of euthanasia are antagonistic, no slippery slope effects, and no evidence for the concern of the European Association for Palliative Care that the drive to legalise euthanasia would interfere with the development of palliative care. Rather, there were many indications of reciprocity and synergistic evolution.

My assumption is that this is in BMJ as a debate-sparker as the UK considers 'assisted death' legalization.

Challenging ethics dogma; ethics of discharging opioid addicts; Pal-Pourri

1)

Some of you may have read “Salon,” a new monthly opinion column in Canadian Medical Association Journal (CMAJ). At least some of them appear to be intentionally provocative. This month’s is a case in point. “Biothethics? A Grand Idea” pretty much lambasts the basis of modern medical ethics in North America as an invention of “medical amateurs” and based on “simplistic readings of enlightenment philosophers.” The author, a bioethicist, has “never found the standard principles of bioethics useful in my work.”

Specifically, the crown jewels of autonomy & self determination are pretty much fictions. We are social creatures and cannot separate the individual from family, community, and medical institutions. Self determination is based on knowledge and knowledge on experience. How can a patient practice meaningful self determination when s/he cannot truly understand the choices to be made? Beneficence? You can almost hear the “Oh, pu-leeze!” “Bioethics is mostly a rationale for institutional objectives rather than patient desires and needs.”

This one-page article is adapted from the author’s longer article (which I haven’t read), “Bioethics as Ideology: Conditional and Unconditional Values” in Journal of Medicine & Philosophy. Of necessity, then, it is an oversimplification. If you are up for a challenge of your basic ethical training or assumptions, this sounds like an interesting read. The author doesn't want to jettison bioethics. He just thinks it needs to be reborn.

2)
Here’s one from our recurring substance abuse theme: Peggy Compton, a nurse researcher and addictionologist, has written a commentary for Pain Treatment Topics on the ethics and practical effect of discharging patients prescribed opioids who show signs of substance abuse. For those unfamiliar with the issue: there are some (many?) pain practices that essentially have a zero tolerance policy for "aberrant" drug-related behaviors. They are sometimes referred to as "One Strike Policies." Noncompliance with a treatment plan or opioid "contract" or behaviors that appear on a list of "aberrant behaviors" is regarded as prima facie evidence of "addiction." The knee-jerk reaction is too often to stop prescribing opioids and refer the patient elsewhere--in other words, to discharge the patient.

Compton's thesis is that pain and substance abuse/addiction need to be treated simultaneously. The two disorders are chronic diseases that play out in context with each other. Primary care, pain, and psychiatry/addiction treatment partnerships are the optimal team approach. If the patient is discharged for noncompliance or aberrant behavior, neither the pain nor the addiction will be appropriately addressed. Practical approaches are discussed. This approach is not unique to Compton, but it is the first article I have seen to focus on this one topic.

Pain Treatment Topics is an excellent source of information on pain of all types. Almost all resources listed are readily accessible. Some, like Compton’s commentary, are exclusive to this site. Pain Treatment Topics has just announced the launch of a new section on pain in palliative care. So far it is light on content, but I assume that the thoroughness with which other subtopics are treated will be continued with this one.

Compton has also just published an article on urine toxicology in chronic opioid analgesic therapy.

Herbal and Dietary Supplement-Drug Interactions in Patients with Chronic Illnesses--American Family Physician.

The Nov/Dec issue of Journal of Hospital Medicine (a new journal for hospitalists entering its 2nd year) has several articles of interest to palliativists (to use Christian’s term).

OK, I know we don’t usually highlight stuff in palliative care journals, but . . . Have any of our readers used the Mini-Suffering State Scale? It was developed in Israel and used to assess and prognosticate survival in advanced dementia. A new study in American Journal of Hospice and Palliative Medicine uses it with advanced cancer patients. The authors report that it can be potentially used to prognosticate survival and anticipated level of care.

Here's one we missed last month--A new report from the IOM: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.

Just say 'Die'; Urine drug testing; More

Happy New Year and welcome to 2008, which is Pallimed's 4th calendar year (we've been around since 2005), which seems like a long time to me, and perhaps should warrant a more festive or at least reflective post that the one I'm composing, but oh well.

1)
Journal of Clinical Oncology has an 'Art of Oncology' piece with the not-too subtle title and message 'Just Say Die.' That is - when you think a patient is in fact dying, or death is nearing, or whatever, to tell them that, D-word and all. It has the cheekiest table I've seen for a while in the article: column 1 contains actual quotes from oncologists to a dying patient (most of them awkward, and wordy), column 2 is labeled 'What the physician meant' (the translation of column 1) and every entry is 'You are dying.'

The question, at the heart of editorial, is essentially - is important to say die/dying/death to a patient if that's what happening - as opposed to some euphemism ('time might be getting short,' 'this may be entering a terminal phase') - as long as the patient understands what we mean? The author emphatically (although not dogmatically) that the answer is Yes to the above question, and gives several reasons, which go beyond 'it's the right thing to do,' and I'll excerpt my favorite:

"Clearly, the quality of an end-of-life discussion may influence the quality of the relationship we have with a patient. Forthright and clear exchanges will help nurture and develop better relationships while confusing discussions could cause irreparable harm. Death and dying are painful and emotionally charged issues. These words cannot just be thrown into the discussion for clarity's sake; they must be used with care and understanding to let patients know what physicians really mean. As Loprinzi et al suggest, "Such stark and life-changing information needs to be shared sensitively if it is to deepen, rather than injure, trust between patient and physician." Some of the most important talks we have with our patients will be those where we need to discuss their approaching death. These discussions help us understand how they view their future and their prognosis. Oncologists get to know their patients’ personalities well as they care for them, and our conversations (and the words we use in those conversations) are tailored for that individual. Will using the words "death " or "dying" be the right thing for every patient or conversation? No. But used appropriately, these words could help improve our discussions about death with many of our patients."

It's my favorite because it frames the conversation in reverse to how it's often conceived: as a way to build trust/relationship with a patient as opposed to a way of undermining trust (because we've failed them, because we are hurting them by telling them unwelcome information, etc.). It reminds me of times during my training when I was discernibly scared of telling a patient the truth, so much so that on several occasions I was patted on the arm by the patient him/herself and told, in as many words, 'There, there, I know this is tough for you.' Humbling moments, to be sure. Facing decline and death is frightening enough that most patients probably don't benefit from seeing their physicians fumbling for words in talking about it, afraid to name the facts of a situation....

As a perverse aside, I'll also note that when I first saw the title of this article I was instantly reminded of a Simpson's episode when Bart's arch-nemesis Side-Show Bob denied homicidal intent behind his writing of "Die Bart, Die" by claiming he was merely writing in German "The Bart, The."

The same issue also has an article about age as a prognostic factor for patients receiving treatment for non-small cell lung cancer (the data are taken from a couple therapy trials). The conclusion is that comorbidity but not age, per se, was associated with worse prognosis.

2)
Multiple from the last couple issues of Mayo Clinic Proceedings....

Most welcomed, to me, is a practical/clinical review of urine drug testing. It's readable and thorough, and answers many of the questions that come up (at least in my experience) regarding drug testing - ones that I'm asked a lot (e.g. oxycodone and methadone are not picked up by routine 'opiate' screening, sertraline can cause a positive test for benzos, and poppy seeds can lead to 'false' positives for opiates). As to that last point, they cite one analysis which suggested that a poppy seed bagel can have 1.5mg of morphine in it! Anyway, a good one for the teaching file.

There's also a brief discussion about engaging the 'hostile patient,' a situation familiar to all of us. It provides straight-forward, practical advice, and gives examples of language to use. Most appreciated is the discussion that defusing these situations and forging therapeutic alliances with patients can take just a few minutes. It's a teaching point I try to make again and again to residents when we're talking about communication skills: good communication does not take a long time (usually) - sitting down, pretending you have all the time in the world, asking the patient's understanding of what's going on, and sharing info with them/making recommendations can all be done in a matter of minutes in a lot of cases. Careful communication saves time in the long run. (Ok, I'll admit it, that's a 'talking point,' and one that I can't back up with data, but I believe it with sufficient confidence that I promulgate it. I often show little videos of breaking bad news interactions with patients - the 'bad example' is 2.5 minutes long & the 'good example' is 3.5 minutes long and includes therapeutic silence etc. I often ask residents how long they thought the interactions were, and they tend to substantially overestimate how much time was spent - especially the therapeutic silence - 10 seconds - it seems like 30 when you watch it. Anyway, the 3.5 minute video, which is a great demonstration of compassionate, patient-centered communication in which the clinician gives the sense that he has all the time in the world for the patient, is a great example for the residents that all these good communication skills are not time-consuming.)

And super briefly: there's also articles on hospitalized patients' expectations about interactions with chaplains (what they want out of their visits with them, how frequently they want those visits, etc.); on the content of patients' advance directives (i.e. whether they designate a proxy, whether they empower their proxy to withhold or withdraw treatment, etc.); and a single institution study about the prevalence of advance directive completion amongst health care providers at a cancer center.

3)
JAMA has an article comparing opioid prescribing in emergency rooms by race - white patients were more likely to receive an opioid for pain than African-Americans, Hispanics, and Asian-Americans, even after adjusting for pain severity and diagnosis (even, for instance, long-bone fractures). An associated editorial surveys global disparities in pain treatment, and doesn't mince any words:

"The overregulation of medicinal opium is an enduring and critical problem that contributes to the global undertreatment of pain."

DNR Goes to School; Patients’ fear of morphine limits use

1)
An article last week in the Chicago Tribune introduced me to something brand new in my experience: DNR orders for kids in schools. So where have I been? Like most people who don’t work in a school, don’t work in pediatrics, and have healthy able-bodied kids, I hadn’t given it much thought. Of course, it makes eminent sense to have this conversation. All children, by federal law, are permitted to attend school and must receive reasonable accommodation given their condition. This includes those with life-limiting illnesses and those with severe disabilities. Kids in both categories live a lot longer these days because of advancing technology and medical knowledge. This has apparently been a hot topic in schools since at least the early 1990’s, although, according to a recent study in the Journal of School Nursing, few school districts have official policies and procedures. In some states, a DNR order is not recognized outside of a health care institution, much less in a school. In others, “out-of-hospital DNR” forms are provided by the state (see sample from North Carolina at right).

The National Education Association published a Policy on "Do Not Resuscitate" Orders in 1994. The American Academy of Pediatrics published a supportive Policy in 2000. Both acknowledge the complexity of the issues and the need for state laws and local school systems to establish appropriate policies.

The issues:

• General lack of knowledge (among school personnel) about the process and meaning of resuscitating a fragile child; misunderstandings of DNR
• This is about death—we can’t have children dying in school; this would be a terrible burden on the staff; how would we support and reassure all the other children if we allowed a sick child to die?
• Liability issues—what if we make the wrong decision on a given day?
• Should DNR orders in school be limited to those children who have terminal illnesses? What about frail/fragile children with severe disabilities but not progressive illness?

Thanks to the EOL Group at the Yale Bioethics Institute for the article and my title.

2)
There is an interesting UK study, published online ahead of print, in Annals of Oncology. “Strong opioid”-naïve patients with progressive cancer-related pain were interviewed about their willingness to take strong (WHO Step 3) opioids (specifically, oxycodone, which was described to the patients as being “similar to morphine”). Of 29 patients approached to participate, 18 agreed to be interviewed. They were almost uniformly (14 of the 18) reluctant to take a morphine-like drug because they associated it with advancing disease, death, and even hastening of death. They saw morphine as a “last resort” treatment option. Some (12) accepted the prescription because of the severity of the pain or the perceived impact of their pain on loved ones—“they felt they had no choice.” Interestingly, the patients’ relationship with and trust in their oncologist played a role in the decision to accept a strong opioid. If they had confidence in the physician and the physician encouraged the patient to take the prescription (as opposed to offering, then leaving it to the patient to decide), the patient was more willing to take the analgesic.

This study was obviously limited by size and study method. However, the lopsided finding of morphine being so closely associated with death is eye-opening.

An accompanying editorial succinctly reviews the literature on barriers to adequate cancer pain management. The editorialist is troubled by the findings, described above, “from the birthplace of palliative care.” He also sees physician barriers in the way patients reveal the influence of prescribers on their decision to take strong opioids. In at least once case in the study, the physician confirmed the stated fears of a patient’s daughter that the opioid would likely hasten death.

3) Effective today (Dec 19), the DEA has changed its rule on writing sequential prescriptions on the same day, so that stable patients do not need to return to the doctor’s as often for evaluation and new prescriptions. This replaces an extremely controversial DEA ruling two years ago that such serial prescriptions amounted to refills of CII medications, which is illegal. There is a short editorial on the topic on the Pain and Policy Studies Group web site.

Decision making preferences; Symptoms in lung cancer

1)
Journal of the American Geriatrics Society has a longitudinal study about decision making preferences in the elderly. It looked at 147 patients with advanced illnesses (metastatic cancer, ALS, or heart failure with a likely prognosis of less than 2 years) who were prospectively followed for up to two years. They were asked a series of questions about how they wanted their physicians to make decisions for them if incapacitated (on a continuum from completely based on what they think the patient wants to completely based on what the physician thinks is best) as well as how they would want their loved ones to make decisions for them if they were incapacitated (on a continuum from the loved ones making decisions based on what they thought the patient would want to based simply on what the loved ones think is best for the patient...they were trying to capture how much patients would endorse a 'substituted judgment' ideal as opposed to a 'best interests' ideal). It is similar in some ways to this paper I recently blogged about - both papers use the same basic scale to measure decision making preferences (that post also explains what the 'blogging on peer reviewed research' icon is all about for those of you who missed it).

At baseline there was a wide spread of preferences, with most answers in the middle, however they were definitely skewed towards relying more on substituted judgment (and not 'best interests') and more passivity/reliance on physicians in regards to how they prefer to make decisions. The preferences regarding loved ones pretty much stayed stable over time, and not surprisingly older patients (over 80) endorsed a 'best interests' standard more than younger ones. Preferences for physician involvement for decision making shifted, slightly but significantly, towards more substituted judgment over time, particularly in college-educated patients.

Several points here: the findings broadly support the idea that patient's decision-making styles/preferences are stable overtime, suggesting that advance care planning - talking with people as to how they want decisions made when they are relatively healthy - is a reasonable endeavor. This is also further research that the ideal of substituted judgment may not even be much of an ideal (in the sense of being what we should be striving towards). Patients themselves don't endorse it, instead endorsing (I'm speaking broadly here) a mixture of patient preference and physician recommendation of what's in a patient's 'best interests.' This is of course how most patients, most of the time, make decisions anyway, and so none of this is surprising. There are very few patients, after all, who wouldn't take into account their physicians' recommendations about the best thing to do: this is what physicians do and if all patients needed to do was to look their problems up on WebMD and 'decide for themselves' physicians wouldn't be needed anyway.

Two questions raised by this study: what is going on behind those shifts towards substituted judgment over time by many of the patients in this study? What drives that - could this be a marker of something deeper in the way patients conceive their disease, their story, and their role in it, in some way that changes over time? The other question I had is what did the patients themselves think about this attempt at distinguishing between what people think is in their 'best interests' vs. what people think they, themselves, would choose? Wouldn't they choose what was in their best interests? While clearly patients went along with the research and answered these questions (and most of them wisely answered somewhere in the middle), did they think that these distinctions, which have historically been important from a medical-ethical-legal perspective, were in fact coherent, meaningful distinctions?

Sulmasy, D.P., Hughes, M.T., Thompson, R.E., Astrow, A.B., Terry, P.B., Kub, J., Nolan, M.T. (2007). How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study. Journal of the American Geriatrics Society DOI: 10.1111/j.1532-5415.2007.01473.x

2)
Journal of Clinical Oncology has an article about symptom prevalence in lung cancer in relation to time of death. The study involved prospectively gathered symptom data from 400 Swedish patients (mean age 66 years) starting shortly after they were diagnosed with inoperable lung cancer. Data were gathered at multiple, pre-specified points up to 1 year after diagnosis. Symptom prevalence, intensity, and distress were all measured. Most patients died during that year, and the researchers analyzed their symptoms as a function of time before death (comparing those in the last month of life; last 1-2 months of life; 2-3 months; etc.).

Reflecting the number of data points they gathered, this article has a couple of the most astonishingly complicated tables I have ever seen in a clinical research article: if Edward Tufte was dead he'd be rolling in his grave. They are bad enough to be described as non-"human-readable." Thankfully, there is text to summarize them: breathing problems, pain, and fatigue were consistently rated as the most distressing symptoms, and most symptoms, notably pain and dyspnea, worsened as death approached. Half of the patients approached to participate in the study declined, and a good percent of them declined because they were too fatigued or ill-feeling; one wonders how much worse the findings would have been if these patients had participated.

The fact that symptoms and function worsen as one dies is not surprising or new (although rarely presented in such glorious detail). The more interesting finding is that symptom distress was less predicted by symptom intensity earlier on in the disease (later one distress and intensity closely correlated): pain and dyspnea were relatively mild early on, but still rated as among the most distressing. The authors speculate that anxiety/worry early on about future severe symptoms (of pain and dyspnea) may actually make low-grade pain and dyspnea that much distressing even early in the course of inoperable lung cancer. It's the worry about the symptoms, the realization that they will inevitably get worse, which make them so distressing early on. An interesting hypothesis raised by these data; one hopes they look into it further (it may be amenable to intervention via simple reassurance).

Tishelman, C., Petersson, L., Degner, L.F., Sprangers, M.A. (2007). Symptom Prevalence, Intensity, and Distress in Patients With Inoperable Lung Cancer in Relation to Time of Death. Journal of Clinical Oncology, 25(34), 5381-5389. DOI: 10.1200/JCO.2006.08.7874

3)
BMJ has a news article about the Royal College of Physicians audit on death & dying in UK hospitals.

"But hospitals were less good at delivering bad news. Only 57% of the patients had been told that they did not have long to live, and only 45% recognised the nature of their condition. However, over 80% of carers were aware of the diagnosis, indicating that staff find it easier to discuss the issue of dying with relatives and friends."

Or the patients, themselves, were too sick to even receive the news? This is not discussed in the news item. I'd be fascinated to see a similar audit done in the US, but doubt that will happen since we don't have an integrated health system.

4)
Thanks, Christian, for setting up the Pallimed donation celebration. We are doing this for you Pallimed readers who are also Pallimed appreciators and want to show it in this way. Thank you. And yes there's some schwag that Christian cooked up, as well the quite useful Hospice & Palliative Care Formulary (US version) that the editors at Palliativedrugs donated.

Chronic pain series in NYT; National Family Caregivers Month; "Disadvantaged dying;" Competence/decision-making for those with mental illnesses

1)
Health columnist Jane Brody is on Part 2 (Chronic Pain: A Burden Often Shared) of a 3-part series on chronic pain in the New York Times. Part 1 (Living With Pain That Just Won't Go Away) was in last week's Health Section (Tuesdays). NYT articles online are now free.

2)
From the NFCM 2007 page of the National Family Caregivers Association:

Every November the President of the United States proclaims November to be National Family Caregivers Month (NFC Month). It is designated as a time every year to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. Speak Up For Your Rights This year NFC Month will focus on family caregivers speaking up for their rights. This is an opportunity to advocate for stronger public policy addressing family caregiving issues and raise awareness about community programs supporting family caregivers. This is also a time to focus on encouraging family caregivers to always... Believe in Yourself . . . Protect Your Health . . . Reach Out for Help . . . Speak Up for Your Rights.

It is not surprising, but worth noting, that some of Brody's advice to caregivers of those with chronic pain is very similar.

3)
"Disadvantaged dying" is a term I lifted from an interesting commentary in the International Journal of Palliative Nursing on palliative care for those with intellectual disabilities. I think this dovetails nicely with some of the recent discussion of competence, including competence in those with psychiatric disabilities [See also the following item]. The authors describe a nascent model program in a community in the UK that focuses hospice and primary care services on patients with intellectual disabilities and their carers. One of the authors is a nurse with a long-time interest in the care of people with intellectual disabilities. The other two are nurses in hospice and primary care, respectively. They point out that this population is living longer than in the past, and therefore subject to the same chronic illnesses of aging as the rest of us. They also imply that their carers are also more likely to die before they do--in hospice or otherwise--and so need information and support tailored to their needs. Very little research has been done on end-of-life issues with this population. There are serious practical and ethical questions, in addition to the general invisibility of this group. The authors describe a systematic and collaborative approach (what a concept) to developing and implementing services in the community and education initiatives for hospice, primary care, and disability professionals, as well as carers and the clients themselves. They point out that having an intellectual disability doesn't mean you won't have preferences or can't make some choices.

Unfortunately, this journal is difficult to access. Not many people or libraries in this country subscribe to it and it is not indexed in PubMed. This particular issue, from Sep 2007, is not yet indexed in CINAHL, and the publisher does not make articles available online.

Also, check out this new EPERC Fast Fact & Concept (co-written by Drew): #192: Palliative Care for Adults with Developmental Disabilities.

4)
Competence/decision-making for those with mental illnesses
Some of you may have missed this link in a comment from a reader: Competence Issues in Self-Directed Care. This is an article on self-care and decision-making for people with mental illness. It is on the Substance Abuse and Mental Health Services Adminstration's web site.

Advance directives don't apply to those with mental illness because of legal restrictions, according to a short letter to the editor by Thomas Szasz, reponding to the UK's recent law mandating that advance directives must be honored. Szasz is a psychiatrist (now well into his 80's) who has always been at odds with the psychiatric establishment for what he sees as coercive and paternalistic approaches to management. He takes a civil rights approach to "freeing" psychiatric patients from restrictive laws and "incarceration" that prevent them from making meaningful decisions in their own self interest.