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Jay, a primary care physician who writes at Two Women Blogging does an excellent review of the Dan Savage editorial on Washington State's I-1000 Death With Dignity initiative I posted on previously. She covers many issues very well and I will highlight a few of my favorite parts here:

I was also shaken by Savage's article, mostly because his mother had lousy care. I don't see any mention that hospice or palliative care was offered to her at any point, although she clearly knew she had a fatal illness and was deteriorating.

I really like this primary care doctor!

Savage equates physician-assisted suicide with "end-of-life-pain-management". No. No. No. The medications used for suicide are not pain medications; they are sedatives. We can achieve adequate pain control for more than 90% of people at the end of their lives (see, I told you I've been studying).

She would make a good palliative care doc it seems! And from reading her past posts she is studying for the palliative medicine boards! Woo-hoo!

If Savage was trying to say that assisted suicide can be merciful, I would agree, but I think he is speaking from the common - and mistaken - assumption that good pain control will shorten life, and is only offered as a means to death. Most people with pain and shortness of breath can benefit from treatment with narcotics.

I'll giver her a pass on the 'opioids not narcotics' pet peeve because she makes some great points!

She brings up an interesting take from Prof. Susan Wolf who thinks women will disproportionately choose physician assisted suicide:

And might this tendency be compounded by a cultural lineage exalting female suicide, a tradition going back, Wolf suggested, borrowing from the work of the French classicist Nicole Loraux, to Greek tragedy, where suicide is carried out almost exclusively by women?

That is an interesting point, I never would have thought of if it wasn't for the internet and blogs. Ain't technology amazing at creating new relations and connecting ideas and people?

And she finishes the post with a reference from the classic NEJM article by Quill from 1991. If any of you have not read his piece on Diane, go to your medical library now. Or read it online at a non-NEJM approved site. It is a seminal piece of writing for all of medicine regardless of how you feel about his actions.

I hope she blogs more on palliative medicine issues.

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(For EMAIL subscribers click the title of this post or links below to see the videos)

Martin Sheen in 30 second spot for No on I-1000


Personal Story in support of I-1000


Do you think these ads accurately portray the issues?

A Seattle newspaper columnist who opposes I-1000 has a couple of columns about his concerns. His main argument is about the foundation of a democracy is to protect life. Any PoliSci majors want to debate that point?

Dan Savage has a follow-up editorial with a slight mocking tone (Life is Beautiful at the Hospice) regarding the argument that physician-assisted suicide is not necessary because of hospice.

Death is always beautiful and peaceful at the hospice—and once you’re in a hospice, why, you won’t want or need the lethal dose of medication that I-1000 would allow your doctor to prescribe you (so long as you had less than six months to live, asked for it twice, once in writing, and a second doctor signed off on it), so what’s the point of voting for that silly death-with-dignity initiative anyway?

He also makes another post highlighting commenters who have hospice horror stories. What concerns me is some of the mischaracterizations of what hospice is and is not by people who have n of 1 or 2 experiences. As I said in my recent post, hospice and palliative medicine cannot fix everything, but this almost feels like it is diminsihing what hospice can do.

USA Today has also covered I-1000 so it is getting some national attention. A commenter at Medical Futility Blog noted that it may not become a national issue for this reason:

Makarios said...

Given the fact that there's an election campaign on, I don't think that anyone wants to go there. It's not a Democratic issue, and the Republicans remember the public revulsion that was expressed when they were practically trampling on one another to get Terri's feeding tube re-inserted. Accordingly, the noise machine has likely been set to "mute" on this sort of thing--at least until after election day.

For a lot of these posts I would encourage you to read the comments to get the feel for what the public thinks about medically hastened death.

(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.)

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(See standard disclaimer at the end RE: Hastened Death)
I wanted to highlight some of the editorials and articles regarding the upcoming Washington State I-1000 Death With Dignity Act. (You can get some basic info from my previous post, if you are not familiar with the proposed legislation)

The issue of hastened death and specifically physician-assisted suicide is important for the palliative care community as it highlights many of the concerns we (legally) deal with on a daily basis: autonomy, adequate symptom control, the personal nature of suffering, conflicting values among patient, family and staff, conflict of faiths, the loss of control in the dying process, the possibility for personal growth during times of crisis. These concerns are in a complex dynamic in palliative care and so the many heated arguments about hastened death highlight the turmoil involved in caring for dying patients. This allows the general public some insight into what hospice and palliative care teams would call Wednesday afternoon.

Dan Savage wrote an editorial last week titled, "In Defense of Dignity
I Hate to Play the I-Just-Watched-My-Mother-Die Card—But, Um, I Just Watched My Mother Die." Please go read it then come back here. Pallimed linked to his eulogy for his mother last April. (An excellent read with great insight into family loss.)

His piece focuses mostly on control over the dying process and the issue of choice. I think the selection of the word 'choice' is important and I am surprised more has not been made of this initiative from the national press or even medical blogs. This would seem to be a very polarizing and political issue which would have have the press salivating, no?

My stepfather would rush her to a hospital, and she would come home a few days later having accepted some previously feared development—being hooked up to an oxygen tank, having to use a walker—as her "new normal."

I appreciate his use of the phrase 'new normal' as this encapsulates the increasing medical support when one faces declining health and the fact that patient and family often change what is an acceptable state of health until there is some threshold. This line in the sand is different for every patient and every family. It is even different for the same patient at different times in their life. 'Past me' may not have chosen 6 years on hemodialysis for 'present me', but 'present me' thinks it is just fine and would not mind if 'future me' can claim 10 years on dialysis if 'future me' is still alive.

Savage goes on to comment on two widows who have opposing views on physician-assisted suicide:

The woman voting for the initiative—whose husband died of brain cancer—wants terminally ill people to have a choice at the end of their lives, a choice to end their suffering and hasten an inevitable, rapidly approaching death. The woman voting against the initiative wants—well, she wants what we all want. She wants to have a good death, a peaceful death, a death like the one her husband, um, enjoyed.

Cynical, yes, but some people can have a good and even great experience while dying. But I can't Polly-Anna everything and say that is possible for everyone. The medical aspect of dying is just one part, and some might say a small part of making sure dying is good and peaceful. If we (as individuals and as a society) look at death as a significant event in life much like being born, hitting puberty, your first kiss, getting a first job, getting married, having children, getting fired, becoming a grandparent. There are aspects of celebration and sadness in each of these as there is in death. For all of these events the balance sways towards celebration when one is adequately prepared and supported. Same as in death. If one has not made some initial thoughts about the 'inevitable' end of one's life and got the right people in place to help, it is likely going to turn out poorly. Palliative care and hospice can help make great advances in both of these areas but a lot of it has to come from the person within.

Don't we all want that kind of death? Wouldn't it be wonderful if each of us could enjoy a Hallmark death? Wouldn't it be ideal if each of us passed from this life into the next—aka "the void"—enveloped in the love of good caregivers and under the care of competent "pain management" professionals? But not everyone is so lucky. Some of us have to endure deaths that are gruesome and protracted and excruciatingly painful, deaths that involve pain that cannot be "managed," deaths that our loving caregivers can only stand helplessly by and witness.

So what do we as a society do about the one's who are not prepared and do not have the right support in place? Well an easy fix is to ensure equal access to competent pain management palliative care professionals. That is a pretty good way to avoid "gruesome" and "excruciatingly painful" deaths. It does nothing to address the suffering of time as one waits for the hour of their death. Waiting and suffering are doppelganger's and if that is the core issue of suffering as it may be for some patients and likely many more family members, there little to fix that except the legalization of hastening death via medical means. The only 'cures' I know for suffering from time is helping people find some meaning in the time and to help bring some grounded perspective to the hours that feel like days. What surprises many people is that dying takes a while. Some of the most difficult conversations in palliative care center around, "Why haven't I died yet?"

...a doctor pulled me and my stepfather out of my mother's room. They were out of options. Nothing more could be done. Her battered lungs were failing; one had a widening hole in it. Amazingly, the doctor didn't say, "It's over, this is it." He laid out the facts and we stared at him dumbly for that world-without-end moment, and then one of us—my stepfather, me, I don't remember—finally said, "So this is it?"

The doctor nodded.

Ugh. Do doctors still communicate like this? I guess so. The above exchange combined with other statements in the editorial leads me to believe his mother did not receive any services from a palliative care team. How a medical team performs around a dying patient influences the perception of the family in so many minute ways. Remembering family members names, getting them something to drink, asking them about fond memories, being present when there are tough conversations, coming back to check in even when you know don't have to. These all help and they are much more than doing nothing.

So if Dan Savage sees this as modern care of the dying, then I can see his stance supporting hastened death and even feel it is justified. If...that is all we had to offer. But it is not. Palliative care is a growing field spurred by demand from families and patients and the health care community to make sure situations liek these do not happen. Death is tough but with adequate preperation and support it can be an amazing experience. I realize that approach is not for everybody and some people would like a quick, painless, death with no worries about 'lingering.' But to decide to make hastened death available to all requires a large civil discussion, and I wish this state intiative had a broader audience so palliative care could have a large educational platform. So there is my two cents.

(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.)

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Next Tuesday, Pallimed will be hosting Grand Rounds, a weekly best of the medical blogosphere. This is the second time Pallimed has hosted and we are excited to participate again. Thanks to Dr. Val Jones and Colin Son for recently talking the helm and continuing this great tradition.

The theme for next week will be: "Changing Goals of Care"

It can be changing the goals in any direction, not just the curative towards palliative route, although I expect that is a common touchstone for many in the medical field.

And since Grand Rounds is getting very large, I will make sure you all know now, I will write more in depth about 10-15 posts, but I will make sure to list all submissions. Adhering to the theme is encouraged but not necessary. I plan to be searching for good posts that are not submitted as well.

So get those submissions to me at:by 11:59 PM Sunday October the 19th. Grand rounds will be posted on Tuesday the 21st in the am.

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A few months ago, Pallimed featured an International Review of Hastened Death reports in the media. Now the issue of legalizing intentional medical hastening of death (aka Physician-Assisted Suicide or Physician-Assisted Death depending on one's point of view) will be voted on by the citizens of Washington State in November. Surprisingly this has made little waves in the news on the national level or in the medical blogs, but the political blogs and Washington State Media are highlighting this issue.

The proposal is titled Initiative 1000 (I-1000) - The Washington Death With Dignity Act. Some excellent neutral detailed information can be found at Ballotpedia (who knew it existed?). It is being sponsored by a former Governor of Washington Booth Gardner after his experience with his father dying from Parkinson's disease. A poll in early August found 51 % in favor, with 26% opposed and the rest undecided.

This is not the first time Washington has voted on this issue. In 1991 the proposal was defeated 54-46%. The initiative is based on similar language from the Oregon Death with Dignity Act passed in 1994 and enacted in 1997 after many legal challenges including the Supreme Court.

Both sides claim to have multiple different groups behind them, but when I looked on many of the websites of the organizations and could not find ANY mention of the I-1000 initiative. So when you see the Washington State Hospice and Palliative Care Organziztion listed as opposing I-1000, they don't have any mention on the WSHPCO website. Same thing goes for the ACLU supporting I-1000. Nothin' on the ACLU site either.

Supporting Organizations
National Death with Dignity Center
Compassion & Choices

Opposition Organizations
Coalition Against Assisted Suicide
Not Dead Yet
Washington State Medical Association

Here are the main websites for supporting (Yes on I-1000) and opposing (No Assisted Suicide) the measure.

Dethmama links to some other discussions on the topic on her blog.

In some upcoming posts I will spend some time dissecting some of the op-ed pieces as it relates to care of terminally ill patients, because the essence of the argument for or against physician-assisted suicide has to do with caring for and being a terminally ill person. Since palliative medicine professionals have zillions of experiences with dying people you may be asked about your opinion about the Washington State Initiative so it may be helpful to look through some of the links to become more knowlegable about the requirements, background and reasons for support and opposition of this particular measure.

If you comment on this post, please keep it constructive and avoid any ad hominem attacks.

(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.)

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As many of you know, 'The Journal' in the US for hospice and palliative medicine will soon be changing from the Journal of Palliative Medicine to the Journal of Pain and Symptom Management. By this I mean the official journal of AAHPM is changing in 2009 from JPM to JPSM. I assume this will be a controversial move. Before I say more:

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Hey all you students of palliative medicine, your chance to present at a national conference is here! The 3rd and last call for submissions for the AAHPM/HPNA Annual Assembly has opened (Oct 1- Nov 3rd). This call is for professionals-in-training from any discipline to submit a clinical case for a 20 minute presentation. I am very glad to be a part of this for the 5th year now, and grateful to the AAHPM and HPNA for their ongoing support.

Go here now to submit your case or cases!

On a personal and historical note:

I am somewhat sad though because it will be my last year being involved with case selections and presentations. It has grown over the past 5 years, and I need to move on and let other people take the helm. Personally I think these case presentations are one of the great hidden gems of the Annual Assembly; great, fast, focused presentations and national speaking experience for newer members to the field.

Since this is my last year with the case conferences, I wanted to share a bit of the history of how it came into existence, because I think it demonstrates how persistence, teamwork, and the AAHPM's willingness to take a risk made a big difference.

So in 2004, the Professionals-in-Training Special Interest Group (PIT-SIG) formed* and made a list of goals to help junior members of the Academy get more involved. We had a lot of ideas at the inital brainstorming session with Chad Farmer, Lynn Bunch, Brian Murphy, Laura Morrison, KJ Williams, Annette Geisler, and others. But one idea that stuck out the most was an opportunity for palliative medicine fellows to present at the Annual Assembly.

I remember very clearly going up to the (then) new president David McGrew, with all the confidence I could muster and introducing myself as a palliative medicine fellow, and newly elected chair of the newly formed PIT-SIG and that we would be submitting a proposal for a reserved slot for fellows to present. Only after I finished talking to him did I realize how...ummm forward that was.

The first year we had 13 submission and 5 presenters in a single 90 minute slot. We had a smattering of people there, but it was a start. In 2008, we had 61 submissions and 9 presenters in three 60 minute slots. The case conferences have benefited from the involvement from many people at the AAHPM including: Angie Forbes, Karen Nason, Mary Beth Benner, and Julie Bruno.

Thanks to all of the people who have helped to select cases and moderate the conferences: Giovanni Elia, Kelli Gershon, Laura J. Morrison, Solomon Liao, Christine Ritchie, Lynn Bunch, Pam Fordham, Susan Block, Dick Stephenson, and Drew Rosielle.

*That's a whole other story

Cross-posted to the PIT-SIG blog

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Don't forget that Saturday October 11th is World Hospice & Palliative Care Day. I was surprised to hear this was tomorrow because in past years I have been bombarded by emails about it. Did anyone else miss the boat?

if you feel like you missed out planning any activity this year, then sign the online petition for Palliative Care and Pain Treatment as Human Rights at IAHPC.

Next year, Pallimed will be more on the ball and get you excited and informed about this earlier. In the meantime I will try to ramp up our international coverage of palliative care access issues. Readers if you have any tips send them to me at:

HT to Hospice & Caregiving Blog and Thaddeus Pope @ Medical Futility Blog

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JAMA (huzzah) has published what will likely be remembered as the core publication out of the Coping with Cancer Study (CWCS)(see our posts here, here, and here for more). This analysis looks at the association between end-of-life (EOL) discussions and several outcomes including patient mental health and aspects of EOL care. Briefly: the CWCS was a prospective, multi-institutional (several cancer centers in Northeast US and Texas) cohort study of advanced cancer patients (metastatic; 'failed' first line chemotherapy) and their family caregivers. It involved an intensive psychosocial assessment including disease understanding at baseline; patients were followed over time and bereavement outcomes were measured in family members of those who died (most ~6 months post-loss). This paper is based on the ~320 who died by the time the analysis was done (total enrollment was a little over 600): median time from enrollment to death was 4.4 months.

This study compared outcomes in those who reported having a discussion about EOL issues at baseline vs those who didn't. The presence of an EOL discussion was defined by patients answering positively to the question: Have you and your doctor discussed any particular wishes you have about the care you would want to receive if you were dying? They used 'propensity score weighted' adjustments to balance differences between groups: I can't say that I understand exactly what this means - it seems to be different from the use of propensity scores I discussed previously in the blog. Their use here seems to be, and I trust any statisticians out there will forgive me for saying this, a propensity-score enhanced regression model to adjust for baseline differences between groups. Short story: they used linear and logistic regression models to try to control for underlying differences in the +EOL conversation group and the -EOL conversation group.

37% of these patients (who had a median 4.4 month prognosis!) answered they had EOL discussions at baseline. The differences at baseline, for which they adjusted, were: performance status, symptom burden, survival time, and recruitment site. About recruitment site: rates of EOL conversations varied from 16% to 62% depending on which cancer center you were at. Even if you believe the rest of the results here are bogus that wide variation in patient care (because this is a patient care issue) is astounding and cause for alarm.

Anyway - reporting an EOL conversation at baseline was associated with major differences (improvements) in EOL care and bereavement and no significant differences in adverse mental health outcomes. Rates of depressive and anxiety disorders, PTSD, subscale scores looking at depressive and anxiety symptoms, etc. were the same between groups, even after adjustment. And the results keep on getting better: in another analysis in which they adjusted further for baseline treatment preferences, terminal illness acceptance, and self-reported desire for prognostic information, rates of ICU admission/ventilator use/resuscitation prior to death were lower and rates of hospice length of stays over 1 week were higher in the baseline +EOL conversation group. These were pretty substantial differences in the relative rates (e.g. 11 vs 1.6% for ventilator use; 66% vs 45% for longer hospice stays, etc.). Ok, I guess that last one is a pretty good difference in absolute rate as well - 20%.

These differences in care at the end of life were associated with substantial changes in bereaved caregivers ratings about patients' quality of life (better in those who had less 'aggressive' interventions and who had longer hospice lengths of stay). Bereaved caregivers of patients with more aggressive interventions reported more depression, regret, and other unwelcome outcomes.

Some thoughts:
Because I like the outcomes I am trying to be cautious in interpreting them. The two big questions that CWCS is trying to answer is 1) does having these conversations hurt our patients by causing emotional harm, and 2) does having these conversations help our patients and their loved ones by improving the care they receive as they die? And these findings overwhelmingly show that patients who report having these conversations are no worse off than those who don't report such conversations and the care received by these patients as they die is measurably different/better and these differences are associated with improvements in outcomes in loved ones. One could also argue that it's not just having these conversations (because one assumes that most patients had an EOL talk prior to their death if not at baseline) but that it's having these conversations relatively early that made the difference.

I think the major caveat here, which is one that can't be overcome without a randomized trial (which will never happen, and this sort of study design will likely be the best level of evidence we'll get on this topic), is of course confounding from unmeasured patient characteristics. Two possible sources immediately come to mind 1) patients who willingly report talking about dying with their docs to a relative stranger (a member of the research team) vs. those who don't (e.g. what is actually being measured is not rates of EOL conversations per se but patients' willingness to talk about those conversations, or something along those lines), and 2) patients who reported EOL conversations were more likely to want to have them in the first place and, again, the 'real' difference between the groups is something along the lines of innate patient characteristics regarding openness to EOL discussions, talking about the future, etc. You could imagine that these 'open' patients were more amenable to less aggressive care as they died, may have had more open/sharing relationships with their caregivers which resulted in better bereavement outcomes, etc. The other issue is that they may be measuring a broader pattern of physician behavior, and this reporting of an EOL discussion (or not) really reflects substantial differences in overall physician care for their patients, being more or less likely to offer/recommend aggressive care, etc. and that "-EOL conversation" is a proxy here for, bluntly, bad end of life care.

Reflecting on how concerned I am about confounding, I'm asking myself how would I have responded to this if they found that early EOL conversations had no effect on EOL care (would have believed it, and wondered if the measurable differences were too small to be appreciated with an N of 320) or emotionally 'harmed' patients such as by increasing levels of anxiousness (I think I would have believed that too, although it wouldn't have led me to conclude we shouldn't do it but look more into how it's done, etc.). Given that, the real benefits which seem to be associated with such early conversations, and the disappointing rates of these conversations and disparity across treatment centers, I think that the CWCS has given real backbone to the idea that 'early' EOL discussions should be a standard of care for advanced cancer patients, and that this is not some nice fantasy of self-righteous palliative care people who think that talking about dying is 'just the right thing to do' but something backed by good data.

It's not a 'moral' question, but a clinical one of ensuring the best possible outcome for our sickest patients.


Alexi A. Wright, Baohui Zhang, Alaka Ray, et al (2008). Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA, 300 (14), 1665-1673