Mastodon Mag Citrate 1: Hospice, Hastened Death, Prolonged Grief, & More ~ Pallimed

Wednesday, September 30, 2009

Mag Citrate 1: Hospice, Hastened Death, Prolonged Grief, & More

As I mentioned in a recent post I have accumulated a large back-log of articles to discuss, and so am going to do a few weeks worth of quick-n-dirty article commentaries to catch up.

And so here it is, the 2nd Annual Palllimed Autumn Mag Citrate Bonanza (in reverse chronological order going down my pile):

Medical Decision Making has a study exploring patients wanting chemotherapy and hospice at the same time. It is reminiscent of research we discussed here. This study is based on a survey of smokers (not actual lung cancer patients, and who had a median age of 34 years) and asks them a series of hypothetical questions (essentially if you had incurable lung cancer, and these were the options presented to you, which would you prefer). They were given accurate, albeit simplistic, descriptions of ‘supportive care,’ chemotherapy, hospice care, and hypothetical combinations of those. Basically most subjects responded that they’d prefer chemotherapy and hospice at the same time. This should not be surprising since essentially what they were choosing in this research was 'The Most Care/Win Win' option (treatments to prolong their life, to attenuate chemo side effects and cancer symptoms, and added practical/emotional/spiritual support to boot). Sounds pretty good when the alternatives were not having one of those benefits, and I’m not sure extrapolating from this young/healthy population’s choice of More Help over Less Help particularly adds anything to our understanding of barriers to hospice care.

Which is not to say they’re wrong: having to forswear chemotherapy is a barrier, but a complicated one, and doesn’t answer the question as to whether we want hospice per se to be able to do everything for those with short prognoses (see related post link above). That is, I think part of this research seems to be rooted in the idea that as a society/medical system if someone has a short prognosis (less than 6 months) they should be in hospice and it's a major problem that so many aren't. I'm personally not sure that this is the case (hospice is underutilized, majorly, to be sure) - they should be offered hospice, they should be receiving superb palliative care (whether or not from a palliative specialist), and they should not be offered ineffective, burdensome treatments: 'The Problem' is that patients aren't getting this anywhere nearly as often/much as they should be. This is different from them 'needing' hospice, and that the 'fix' is just getting these patients into hospice. If we advocate for a system in which patients can receive ineffective, burdensome treatments plus hospice care to soften the blow - we aren't doing anyone a big favor.

(Thanks to Dr. David Weissman for alerting me to this article.)

NEJM has a tidy review of renal failure in cirrhosis. It discusses, generally, its pathophysiology and treatment, and the role of liver and kidney transplantation in its management. While not - at all - palliative oriented, it does touch on prognosis, as well as provides a concise summary of the approach to this highly mortal situation that is not uncommonly seen by palliative clinicians at hospitals which manage these patients (ie – a nice brush-up article for the teaching file). The prognosis data are dismal: this article argues for a 50% 1 month and 20% 6 month survival for patients with cirrhosis and renal failure (without transplant). Yikes.

On the social media & medicine side of things, JAMA just published a survey of medical school deans asking about concerns/history with inappropriate content posting to social media sites by medical students. It seems it is indeed an emerging problem. While a lot of the problem seems to be students whining and revealing themselves in undignified situations (drunk/suggestive party shots, etc.), there were also problems with posting confidential patient material (an issue more of a concern to medical bloggers and why we have tried to be very strict about this on our blog). Most of the reports to deans about this were from within the medical school (staff, other med students, etc.) and only 4% were from patients/families themselves.

Social Sciences & Medicine has a qualitative study using grounded theory about the desire for hastened death (DHD) – based on extensive 1 on 1 interviews with 27 adults with advanced cancer at a cancer center in Toronto, all of whom endorsed some contemplation of a wish for a hastened death. These were sick patients – 70% died during the course of the study. The themes that emerged are consistent with what I think many of us who work with dying patients hear frequently. They found that DHD clustered around 3 themes: a hypothetical exit strategy if things get rough; an expression of despair, and a more peaceful-or-at-least-resigned, ‘letting go’ meaning. None of these themes and the quotes they give really are consistent with suicidality – these patients who expressed, at times, DHD, were not suicidal, at least in the way we usually think about suicide (that is – really/truly wanting to be dead; instead the patients wanted to feel better or, as they resigned themselves to the inevitable, had times when they wondered to themselves that given this was actually going to happen anyway why wait around).

It’s a fascinating read, if nothing for the quotes from patients and to hear what they go through (and the things that others put them through):

“I've experienced such incredible pain over the last little while and more in the last week. Such incredible pain that it made me think that death is preferable to this…I'll sit there for 2 hours in terrible pain. Such pain where I can't yawn even, and I get only half a yawn and my whole insides turn and waiting for the medication to start to work…I'd love to have 48 hours let's say, I'd love to have this weekend where I could plan to have a nice weekend and have no pain. I'd love to do that and it doesn't happen, and the pain affects everything. It makes you tired. It affects how you can eat. It affects your mood. It affects other people, and the fact is that even if you try to hide it, you can't… So that's hard…and I know it's gonna get worse, so that's hard too. It's great to be alive, and pain takes that life out of you, and to sit there for 2 hours with a blanket around you just shivering, with no solution, is really hard.”
“I find it difficult. The two extremes, where the people who tell me that I'm not going to die because God is good, and that God will save me in a miracle, and I say ‘God is good and sometimes He will save people in miracles. But if it was something that would happen to me – it would have happened already. So we have to accept the fact that there is no miracle here…that my time is over.’ And I also find it very hard, the other side, where I ‘love’ the people who constantly say there's nothing wrong with me, everything will be fine, because there is something wrong with me and everything will not be fine."
PLoS Medicine has a study about ‘prolonged grief disorder’ (aka ‘complicated grief’) which tries to validate proposed diagnostic criteria for PGD for the DSM V. The data come from the Yale Bereavement Study (which also generated this controversial and misunderstood JAMA paper about the stages of grief) and involved interviewing bereaved adults (~300, mean age 61 years, interviewed on average 6, 11, and 20-months post-loss).

This is a complicated, statistics-heavy paper (involving how they developed and validated the diagnostic criteria for PGD based on their data set) and I’ll freely admit it broke my brain reading it; this is to say that I can’t comment personally about how persuasive, or not, their proposed criteria are (an accompanying editorial is supportive however of the findings). It's a revealing insight for the uninitiated into how these new diagnoses get established.

The proposed criteria call for diagnosing PGD after 6 months post-loss, and the symptom criteria (you can read in the paper – Table 3) include yearning and the following other symptoms (and in usual DSM style, noting that these cause significant impairments, are not better explained by another disorder, etc. etc.).
    1. Confusion about one’s role in life or diminished sense of self (i.e., feeling that a part of oneself has died).
    2. Difficulty accepting the loss.
    3. Avoidance of reminders of the reality of the loss.
    4. Inability to trust others since the loss.
    5. Bitterness or anger related to the loss.
    6. Difficulty moving on with life (e.g., making new friends, pursuing interests).
    7. Numbness (absence of emotion) since the loss.
    8. Feeling that life is unfulfilling, empty, or meaningless since the loss.
    9. Feeling stunned, dazed or shocked by the loss.

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