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by Drew Rosielle (@drosielle)

I’m a little bored of all the discussion about physician-assisted suicide. Mostly it’s because legalizing PAS is going to have zero impact on nearly all of my patients, and I think the significant amount of press and energy it gets is a distraction from other things which actually would improve the lives (and deaths) of the patients and families I care for as a palliative doc.

The last time I blogged about PAS was part of my euphemisms series last year, when I elaborated why I did not like terms like ‘assisted death’ or ‘aid-in-dying’ and prefer ‘assisted suicide’ and ‘euthanasia’ (or ‘voluntary active euthanasia’ to be super-clear) instead. I appreciate that I am on the losing side of history here, people already are and are going to increasingly call PAS some variation of physician/medical - assisted/aid-in - death/dying but I’m still sticking with PAS for now. I’ll also note that the Canadians essentially proved my complaint correct last year, in that their Medical Assistance in Dying (MAID) law includes both PAS and euthanasia, underlining my point that the ‘assisted death’ locutions are imprecise and potentially confusing, and that 'PAiD' is no simple replacement for the much clearer 'PAS'.

In the comments on my post last year someone intimated I must not support legalization of PAD and that’s why I want to stick with the label “PAS.” Well, I don’t like PAD or PAS, but it’s also fair to say I have a variety of thoughts and emotions about PAS and its legalization that aren’t easy to neatly summarize. I’ve always felt uncomfortable with it, but I also never thought to myself Dr Tim Quill should lose his medical license or be in prison. In fact the only thought about it I have which is clear and unambiguous is my leading thesis above, that the attention paid to it completely outsizes its clinical relevance to the vast majority of our patients with serious illness, which approaches zero.

I’m thinking about all this because a recent Annals of Internal Medicine has the American College of Physician’s revised position paper on the ethics and legalization of PAS, along with several editorials, and a nice summary of 20 years of Oregon’s Death With Dignity Act (DWDA) data (Table of Contents here). If you care about end-of-life issues or the debate around PAS, get informed and read this issue - it’s good.

The ACP paper is a well-written, cogent discussion of why the ACP opposes legalization of assisted suicide, and does a far better job than I could of outlining the arguments against it. I agree with a lot of the arguments: patients seek PAS not to actually relieve physical suffering but instead for existential reasons; it is unwise to medicalize existential suffering especially with the drastic and irreversible means of lethal ingestion, and legalizing PAS can undermine the doctor-patient relationship.

However….

The reality is that PAS legalization is unfolding in the US as a human rights/civil rights issue, not really a medical issue, and honestly what us doctors think about it doesn’t seem to matter much.

Large-scale organized medicine in the US (eg the AMA, ACP, etc) is solidly against legalized PAS. (Perhaps this is changing – the California Medical Association changed its position to neutrality prior to the its legalization in CA.) Most palliative clinicians (I think) are against it (obviously there is an important minority in our community who are very much for PAS legalization). (I've not seen good data on this in the US, but I believe it to be true; in the UK when it was polled many years back, palliative docs were the group of docs most opposed to legalization.) But the voters and legislative bodies who are legalizing PAS are not persuaded by our objections. The broad, tangled, clinical/therapeutic, and professional concerns many of us have about it aren’t a persuasive concern, because PAS is seen more through the lens of an individual civil right, and not as a medical issue.

Frankly, PAS remains pretty popular with the public (although I wonder if the public actually understand what it is and isn’t), and I think in the US the wave of legalization is going to continue state by state in the coming decades, and organized medicine is not going to stop this because we’ve already lost the argument to the realm of ‘rights.’ Rights are important, of course (!), but I really want to emphasize this point because I think that when people like me think about PAS we think about our suffering patients and our aspirations to help them find meaning and comfort in their dying days, and all those clinical, therapeutic things we do in hospice/palliative care and medicine to care for patients nearing their deaths, and none of that matters much in the legal debate because the focus is on a person’s right to autonomy and control.

So I’ve been trying to accept and anticipate that this is going to happen, and asking myself how I am going to react to it, and also trying to understand PAS with actual data about actual patients (as opposed to grand pronouncements and philosophical noodling), which thankfully we have, because the Oregon PAS experiment has been highly investigated.

Looking at the data (in the Oregon DWDA paper above and other publications) I have several major observations.

1) The proponents of PAS who claim it is an important option to prevent physical suffering at life’s end should kindly stop making such claims. The data over the year has clearly supported the observation that most patients seek PAS for what I think are best characterized as existential reasons: concerns for loss of autonomy and function, etc. Patients who would (quite literally) rather die than go through the dying process which indeed strips one of autonomy and function. PAS is not, on the ground, actually being used to mitigate unrelenting physical suffering in any major fashion. The proponents of PAS should defend it and promote it for what it actually is, and not use scare language to suggest to people they need this option to make sure they don’t needlessly suffer as they die.

2) The opponents of PAS who claim that it will lead to a slippery slope (it will be used by doctors or families to force poor, disabled, or otherwise vulnerable people into killing themselves) need to stop making that claim, at least without the qualification that that has not happened in Oregon. I.e., we have nearly 20 years of data showing that a well-designed and implemented PAS program can exist without any appreciable slippery slope. I’m not saying that there couldn’t ever be a slippery slope, just that we now have lots of data showing that it is not inevitable. All human institutions and programs like are open to abuse and misuse – the Oregon PAS program and medicine as a whole in fact relies on good faith participation which can be abused. But it hasn’t, at least in any sort of measurable, systematic way. In fact, the people who participated in PAS in Oregon are overwhelmingly insured, white, well-educated, and dying of things like cancer, ALS, and organ failure (not, eg, quadriplegia). (Oregon is a very white state, but still the patients receiving PAS are disproportionately white, but one is curious as to what the data will show in California in the coming years.)

3) I do myself have deep concerns that PAS will undermine the profession, as it transforms doctors from healers to, well, something else. However, I have had to face the reality that this has not apparently happened. I don’t have any data for this one, but I know doctors in Oregon, and I’d have a hard time making any sort of claim to the idea that 20 years of PAS in Oregon has hurt the profession, or health care as a whole there. I still think it could hurt the profession, but like in the slippery slope discussion above, I have to admit that it in reality has not, at least in Oregon, and be honest with myself that my objection was probably my own dislike of PAS and bull-headed professional desire to help dying patients find meaning and solace, even in death. When you're getting emotional at the bedside, you always want to ask yourself "Is this my shit?" and if it is you try to check it. The same, perhaps, with emotional policy decisions.  I really recommend reading this reflection piece in JAMA Internal Medicine written by two Canadian doctors helping a patient die under the new Canadian MAID law in which they describe reluctantly participating in the death of one of their patients. It's a thoughtfully written piece, among other things one senses that this 'assisted death' was in fact full of meaning and connection. Additionally, I have a hard time reading the piece and concluding that these doctors' actions are going to destroy our profession. I know I feel a patient wanting aid-in-dying as a sort of professional failure, but reading this reflection has forced to me acknowledge that I may need to just get over myself there.

4) Finally, the Oregon data continue to show that PAS is incredibly rare. About 0.19% of all deaths in Oregon are with PAS, and while it’s impossible to clearly define what the denominator should be, by one measure PAS accounts for 0.54% of potentially eligible deaths. Over ~20 years in Oregon the number of PAS deaths has risen with population growth but is not growing and growing. Some additional patients get lethal prescriptions and never use it. Literally, PAS is an end of life option for the 1%.

Which is exactly my point.

Mass legalization of PAS is not going to be a catastrophe, but it’s also going to do approximately nothing for literally 99% of our patients at the ends of their lives. And this is why I’m a little bored with the whole thing. I’m not oblivious to the fact that PAS has cultural significance (presumably both positive and negative) beyond its actual impact on end of life care, but the idea you come across all the time both implicitly and explicitly that PAS is an important option to have, I just don’t buy. I’m not saying citizens should be denied this option, and undoubtedly access to PAS is very important to the few patients who choose it, it's just that it seems like a big distraction from far more important work that needs to happen.

Because, there are some actually, really, truly, important things that could happen in this country which would immediately, measurably, improve the lives and deaths and our patients with serious or terminal illnesses.

It’s a cold, grey December afternoon in Minnesota as I write this, but off the top of my head, here are a handful of things that would actually, really, truly improve our patients’ and families’ lives with serious or terminal illnesses:

• Universal, affordable health insurance, including drug coverage.
• Universal paid sick leave, including paid family care leave so someone can take 4 months off to care for their dying sister at home without losing their job, their health insurance, and their mortgage.
• Earlier and more routine access to palliative specialist teams (and depending where you live psychiatrists, geriatricians, and addiction medicine programs).
• Widely available, home-based palliative/advanced illness management programs which include nurses, doctors, social workers, aides, chaplains, therapists which can provide active disease management at home, alongside palliative symptom management, goals of care planning, and emotional, existential, and grief support.
• Better, universal primary palliative care training such that primary care providers and key specialists have adequate skills in having goals of care / serious illness conversations.
• A hospice benefit which didn’t make many of our patients choose between hospice and many commonly used palliative treatments like chemotherapy, blood products, noninvasive ventilation, etc.  
• A hospice benefit which paid for room and board at a facility.
• Drug innovation, especially for analgesics which are safer and better tolerated.

There are many more things, big and small, which will truly improve the lives and deaths of our patients and families and PAS isn't one of them.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle. For more Pallimed posts by Drew click here.

Photo Credit: Boredom score by Flickr user smartfat, under Creative Commons Attribution-NonCommercial 2.0 Generic (CC BY-NC 2.0)

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by Drew Rosielle

(This is the last of four posts by Drew on the language we use in hospice and palliative care. You may want to read his reflection on 10 years of practice or his other posts on euphemisms - "Comfort Care," "Palliative Sedation," and "Compassionate Extubation." - Ed.)

"Assisted Death" - So many problems here.

A) To start with, I don't see a need to replace 'euthanasia' or 'physician-assisted suicide' or 'assisted suicide' with new terms. Because those terms have, at the end of the day, well-defined, internationally agreed-upon definitions. The public may not understand those definitions well, true, but the solution to that is educating the public, not replacing the phrases with ones which are less accurate, less precise, more euphemistic.

B) I've seen people claim 'assisted death' to be a synonym for 'assisted suicide' and only suicide, not euthanasia, as well as it being a blanket term for both of them combined. It sort of makes sense as a blanket term - some phrase to capture the practices of medically-assisting death including both euthanasia and assisted suicide. At the end of the day I can live with this use of it, however it is still confusing, and, prima facie, could also be 'interpreted as including medical actions which are not considered to be euthanasia or assisted suicide (deactivating an LVAD, stopping ventilation in a patient with ALS who is totally ventilator dependent, clamping an ECMO circuit). These all involve removing/discontinuing life-prolonging/organ perfusing treatments which the overall biomedicalethical consensus treats as not suicide or euthanasia, which imply actively introducing treatments with the explicit intent of stopping the heart/breathing aka killing.

C) There is the 'optics' argument for removing the word suicide which I understand, suicide is generally considered to be a very bad thing ranging from tragic/horrible to a mortal sin. The proponents of legalized assisted suicide are arguing that it is moral and ethical, therefore it isn't suicide, or shouldn't be called suicide, because suicide is bad. I understand this argument, however I am not persuaded. Again, in part because 'assisted death' is more confusing, less accurate than 'assisted suicide' as above. Maybe 'assisted self-killing' would be better? 'Assisted self-administered lethal ingestion'? 'A terminally ill patient ending her/his life deliberately by taking a prescribed medication which was prescribed to them for the express purpose of ending the patient's life?' Maybe? Not parsimonious, but an accurate description of what you're talking about, without 'suicide.' I guess to me, however, deliberately taking a lethal dose of a drug to intentionally end your life that day, is suicide. That's what suicide means, acknowledging there are many ways of doing it which don't involve prescription medications. And the proponents of assisted suicide are making the argument that it is morally acceptable to do that in certain circumstances, and it is professionally acceptable for doctors to help patients do that. That's an argument one can make, and the proponents of legalized assisted suicide make that argument, but I don't at all see how that's an argument that the action is not suicide. It's an argument that there is a circumstance in which suicide is ethical, justified, moral, and within the scope of medical practice. Proponents, go ahead and make that argument, just don't argue that it's somehow not suicide. Calling it 'assisted death' however just seems to confuse and obfuscate, not clarify.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 

Illustration Credit: Christian Sinclair CC-BY-SA-NC

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by Christian Sinclair

Tonight at the Democratic Town Hall, a New Hampshire voter, Mr Jim Kinhan asked a very important question of candidate Senator Hillary Clinton about care at the end-of-life and personal choices. While his question may not have been direct, gauging from Mr. Kinhan’s recent editorial in the Concord Monitor, it appears the focus of the question was intended to be about the challenging debate on physician assisted death. (Full Transcript here - Key Portion excerpted at the end of this post)

.@HillaryClinton: "We need to have a conversation” about end-of-life choices https://t.co/cn6FMOcwSz #DemTownHall https://t.co/ra6VieraLt

— CNN (@CNN) February 4, 2016

This can clearly be a vexing question for any presidential candidate in either party. So I’m here to offer my guidance and expertise on how to best answer this question that will actually do the greatest good for the greatest number of people.

Let’s look again at key points in Mr. Kinhan’s question to make sure we are addressing his concerns:

• He accepts that his prognosis is limited, but notes that he is still active and functional.
• He is open about his spiritual needs.
• He is looking for leadership to advance the public discussion around personal health care choices.
• He voices concerns not only for the patient but also the caregiver.
• He wants life to be enhanced but also the end-of-life to have dignity.

So Democratic and Republican presidential candidates, here is how you can answer this question:


===BEGIN===

Thank you for sharing your personal story Mr. Kinhan. To see that a serious illness won’t prevent you from advocating for important issues is inspiring to me and I’m sure this whole auditorium.¹[Applause]. You mentioned personal choices and dignity for those with advanced illness and a possible poor prognosis. Our health care system is designed to use the most advanced diagnostic tools and cutting-edge therapies. And while these can be very expensive even putting people into medical bankruptcy, we often fall short on providing the things that matter most to patients and their families.

One growing new area in healthcare finding ways to bring value and quality (and without staggering cost increases) is palliative care. You may not know very much about palliative care, but when Americans find out about it, over 90% want palliative care.²

A doctor, nurse, social worker, and as you mentioned spirituality³, a chaplain, and others are on your side; spending time with you; skilled in communicating tough issues; relieving your symptoms and helping support you and your family. But right now we only have 1 palliative care doctor for every 1,200 people with a serious illness. And we need more social workers, nurses, chaplains and others trained in this skilled care. In my presidency, I will work to increase training and research into making palliative care more accessible for all patients facing serious illness.

In addition, I will re-examine the limitations of the hospice benefit, which presents a tough choice about focusing on comfort only. What if you could have the dignity and support hospice brings without having to make one of the toughest decisions to forego potentially life-prolonging therapy?

And if we do those two things well, then we can really help the family caregivers who provide $470 billion worth of care. All of it unpaid. [Applause] We can give them back some of the dignity that illnesses like cancer and heart failure and Alzheimer’s rob from all of us.⁴

And as for the growing national debate on physician assisted suicide or as some call it aid-in-dying, states are grappling with this very issue, which highlights the importance of states rights to settle these difficult social questions.⁵ While I recognize there are surveys showing a majority of American’s support the ability to end their own life when facing a terminal illness, it is important to be cautious in opening new rights so we may protect those most vulnerable to abuse by those same rights.

While physician assisted dying laws are used by far less than 1% of people dying in states where it is legal, my job as president is to do the most good for the most people. That is why - to help 100% of people facing serious illness - I would want to fund more research and training into palliative care, re-examine the limitations on the hospice benefit, and figure out how we can better support family caregivers and patients so they have dignity throughout their illness and not just at the very end.

===END===

So there you go politicians. I tried to answer in a way that may fit your style and needs and still gets to the important issues. If you have a particular area you want to emphasize more with your base, I'm always available to talk to people about palliative care. Or I can direct you to many smart people who can do the same!

PS Politicians and advocates of palliative care also should support the Palliative Care and Hospice Education and Training Act (PCHETA) and check out the advocacy pages for the Center to Advance Palliative Care (CAPC) and the Hospice Action Network (HAN).

PPS More interesting background on Mr. Kinhan - "I'm not living with cancer, I'm walking with cancer." Concord Monitor video featuring Mr. Kinhan.

Christian Sinclair, MD, FAAHPM, is a palliative care doctor at the University of Kansas Medical Center, who was a committee member on the 2014 Institute of Medicine report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. He is also president-elect for the American Academy of Hospice and Palliative Medicine. He has no professional or private stance on physician assisted death. This piece is not representative of any of the above organizations and is his personal opinion.

1 - Let's make sure you are being human AND presidential. Empathize! And go for applause lines.
2 - Say it three times and make it stick!
3 - Callback to the original question. Show you're listening and this isn't a canned response.
4 - Everyone knows someone who has been an unpaid family caregiver. It's tough.
5 - Tried to do my best impression of a politician waffling here. 

Excerpt of CNN transcript: 

COOPER: I want you to meet Mr. Jim Kinhan (ph). He's a Democrat who says he is supporting you.

JIM KINHAN: Hello, Madam Secretary.

CLINTON: Thank you.

KINHAN: I'm very pleased to see you. This may come a little bit from right field, this may seem, but it's very personal to me and resonates probably with many other people who are elderly dealing with health issues. The question is coming to me as a person who is walking with colon cancer. And I'm walking with colon cancer with the word terminal very much in my vocabulary, comfortably and spiritually. But I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and -- their end of life with dignity.

CLINTON: Well, first of all, thank you for being here. Thank you so much for being part of this great New Hampshire primary process and thank you for support. And I really appreciate your asking the question. And I have to tell you, this is the first time I've been asked that question.

KINHAN: I -- I figured that.

CLINTON: Yes. I -- I really -- I really...

KINHAN: Maybe any candidate.

CLINTON: And I thank you for it, because we need to have a conversation in our country. There are states, as you know...

KINHAN: Yes.

CLINTON: -- that are moving to open up the opportunity without criminal liability for people to make this decision, in consultation by their families, even, in some cases, with medical professionals. But the issue is whether the medical professionals want to be involved or just be counselors. So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective. So here's how I think about it. I want -- I want, as president, to try to catalyze that debate because I -- I believe you're right, this is going to become an issue more and more...

KINHAN: Exactly.

CLINTON: -- often. We are, on the good side, having many people live longer, but often, then, with very serious illnesses that they can be sustained on, but at some point, don't want to continue with the challenges that poses. So I don't have any easy or glib answer for you. I think I would want to really immerse myself in the -- the -- the ethical writings, the health writings, the scientific writings, the religious writings. I know some other countries, the Netherlands and others, have a quite open approach. I'd like to know what their experience has been. Because we -- we have to be sure that nobody is coerced, nobody is under duress. And that is a difficult line to draw. So I thank you -- I thank you so much for raising this really important absolutely critical question that we're all going to have to do some thinking about.

KINHAN: Thank you (INAUDIBLE).

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by Christian Sinclair

This week's JAMA is focused on end-of-life care with topics ranging from hospice, ICU, POLST, how doctors die, physician-assisted death and more. Our plan is to take some time and review this issue and bring you analysis from your fellow clinicians. If anyone is interested in helping write a review of any part of this issue, please contact editor@pallimed.org with the article you would like to focus on.

We start with an analysis of the two research letters that look into the anecdotal claims that doctors choose different goals at the end-of-life and therefore die differently than the general population. Popularized by a 2011 essay "How Doctors Die" by Dr. Ken Murray, and shared widely on social media, it is good to see research to match with the stories we may hear.

Keep an eye on this space in the next several days as we post more pieces.


Christian Sinclair, MD, FAAHPM is editor of Pallimed and president-elect for the American Academy of Hospice and Palliative Medicine. He sees patients at the University of Kansas Medical Center in Kansas City, KS.

Image credit: JAMA Cover for Jan 19, 2016

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(Please welcome Cory Ingram, MD, MS, FAAHPM to Pallimed.  Dr. Ingram recently attended the 2014 Palliative Care Congress in Montreal at McGill University, "the birthplace of palliative care." He posted many pearls from the meeting to Twitter, and I asked if he would be so kind to summarize his trip to this great conference. Please enjoy! - Ed.)

When Balfour Mount, father of Palliative Medicine in North America, coined the term Palliative Care more than 40 years ago it may have been difficult to envision 1600 people from more than 60 countries making their pilgrimage to Montreal for the biannual celebration of the specialty at the 20th International Congress on Palliative Care. In speaking with colleagues from around the globe the theme that brings them back is consistent. This conference is for the heart.

The congress content is suited for the interdisciplinary nature of the specialities and attendees from around the world. It kicked off with several day long pre-conference workshops. Dr. Tom Hutchinson, editor of the text Whole Person Care*, created a brilliantly constructed day to deeply examine whole person care for persons with cognitive impairment. The day offered a medical review of cognitive impairment followed by a personal account of caring for a loved one with dementia. The question of the personhood and maintenance of personhood while living with dementia was explored prior to an insight into the repercussions for families caring for a loved one with dementia. Preceding a panel discussion, the role of the community was highlighted. It is interesting to think of how we speak about institutionalized persons with dementia as no longer living in the community.

In McGill tradition, the plenary sessions were opened with moving reflections. One reflection set to beautiful music titled “Fragile” from France, which played while photographic images streamed portraying the fragility of life. Plenary sessions with speakers from around the world identified challenges for us to consider for ourselves and those we care for in palliative care. What are the roles of forgiving and forgetting? How do we foster a balance between holding on and letting go? How do you let go if you have nothing to hold on to? How do we balance being proactive and letting things happen naturally? How do we access the spiritual dimensions that are not readily accessible? How do we transfer a fight to control to a search for the meaning of suffering? Is the heart of medicine ultra performance? Where is the art? Where is the lived experience?

In conclusion, the paradigm of the future of medicine is one where palliative care is central to the core of care for all persons. To this end, the Montreal Declaration was created as a formal request for inclusion of palliative care in the United Nations 15 year health targets. You can add your voice to the growing support for the Montreal Declaration by signing on.

Take home messages:

1. Provide whole person palliative care.
2. Understand that palliative care is at a cross road of the humanities and sciences.
3. Avoid limiting our scope to symptomotologists.
4. Maintain “radical presence” to the humanity of another.
5. The art of palliative care is to find the core of each and every person.
6. Dr. Chochinov and Canadian Virtual Hospice launch a new film on Dignity Conserving Care.
7. The elephant in the room is Euthanasia this year in Canada.
8. Euthanasia is not about end of life care….rather it is about life ending procedures.
9. Euthanasia has no place in palliative care.
10. Stay true to the founding principles of palliative care with attention to total pain of the whole person and their family.

Cory Ingram, MD, MS, FAAHPM is a Senior Associate Consultant in Palliative Medicine, Senior Associate Consultant Palliative Medicine, Assistant Professor of Palliative and Family Medicine, Director of Palliative Medicine Mayo Clinic Health System, Director of Palliative Medicine Office of Population Health Management all at the Mayo Clinic in Rochester, MN. The views expressed in this article are my own and do not reflect the views of my employer.

*Link is an Amazon Affiliate link with proceeds going to Pallimed

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The New England Journal of Medicine released an article this week on the experience of implementing a Death with Dignity program in Washington at a University based Cancer Center. In the Fall of 2008, the voters of Washington State passed the Death with Dignity act allowing for the legal practice of prescribing medications for the self-administration by a person with a terminal illness with the goal of ending their life. This can be described using a variety of briefer terms: physician-assisted suicide, physician-assisted death, medically hastened death and others. (For the record it is not technically euthanasia since that describes an act where a health care professional adminsters medication. And that is illegal in the United States.) In the NEJM article the authors refer use the term physician-assisted death, likely because it has been utilized as the most descriptive term that remains value neutral in regards to the presumed psychological pathology of an act of suicide.

This is an important article because it describes how this center went about actually implementing the Death with Dignity program including the following challenges: were their enough doctors to actually prescribe the barbiturates? How would patients know about this programs availability given that is what a legally accessible medical option? Do you put fliers in the waiting room? What if the attending refuses to participate?

To really understand how they approached this I strongly recommend you read the article regardless of your feelings for or against physician-assisted death. With this issue coming up repeatedly on state ballots over the past decade, it could very be legal in your state sometime in the next several years and you may find yourself and your fellow staff grappling with these same difficult questions.  It is limited in that they only served patietns with cancer, and it would be interesting to see how patients with non-cancer terminal diagnosis were handled at this institution.


As has been seen in other reports on why people choose physician-assisted death, the main reasons were loss of autonomy, loss of enjoyable activities, and the loss of dignity.  The center reports that feedback was all generally postiive.

One important piece of data that many people will wonder about is how many deaths are tied to physician-assisted death and is that number changing from year to year. You can always check the Oregon and Washington Department of Health websites as they are mandated to report this data on a yearly basis. In 2012, Oregon had 115 prescriptions with 77 deaths related to Death with Dignity. In 2011 (the last year reported), Washington state had 103 participants and 70 deaths.

The NEJM has also developed a case around physician-assisted death, but curiously they refer to it as physician-assisted suicide (PAS) differently than the authors of the article. At the end of the case you have the opportunity to give your opinion about whether PAS should be permitted. As of the publishing of this post there are 275 responses with 54% against PAS and 45% in favor of allowing PAS.

I would encourage you to take the poll and post your opinion on NEJM, but also to share your responses here with our poll as well. (Feel free to copy your opinion from the NEJM poll and post it here) Our Pallimed poll asks for no identifying information. Results will be shared here in aggregate with some commentary.


Make sure to check the supplemental materials for the NEJM article if you do have a subscription or library access as they actually include the policy from the hospital.

Loggers, E., Starks, H., Shannon-Dudley, M., Back, A., Appelbaum, F., & Stewart, F. (2013). Implementing a Death with Dignity Program at a Comprehensive Cancer Center New England Journal of Medicine, 368 (15), 1417-1424 DOI: 10.1056/NEJMsa1213398

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*UPDATE 11/7/12 9:45am ET: Prop 2 was defeated 51-49%, so PAS/DWD will not be legal in the state of Massachusetts.*

Aren’t we all glad that is over!  With all the attention on the Presidential race, it was easy to lose sight of some key issues which could have a large impact for palliative care providers. It was surprising how little national attention was given to Massachusetts Prop 2 on legalizing physician-assisted suicide (PAS) in the run up to the election.  I was expecting this to even become part of the debates since the connection between health care and Massachusetts was obviously in play.  Part of my reluctance to blog on the topic in the past month may have been related to an irrational fear of ‘death panel’ language creeping up again on the national scene.

I expect Death With Dignity (DWD) ballot initiatives will continue in the future, building off the model established by medical marijuana initiatives in the past two decades.  Both PAS/DWD and medical marijuana legalization will impact how we as hospice and palliative care clinicians operate in states with a broad range of laws.  For instance, with increasing access to medical marijuana and medically hastened death, should we re-examine how we address these complex issues in fellowship training?  What about educating the new hospice medical director who does not have a depth of hospice experience yet?  How do we deal with conscience clause laws in various states?  Is there an incentive for HPM advocates to rail against PAS/DWD and choose the potentially self-serving argument of increasing funding for comprehensive hospice and palliative care services?  

Frankly I feel we as a field have not addressed these issues very well.  We have fought well to become established in modern medicine, and these topics are fraught with danger when discussed in the public arena.  Sure we may feel very confident when in a family meeting addressing a request for hastened death, but those intimate conversations do not lend themselves well to media sound bites and internet commentary.

This week I’ll explore some of these questions about hastened death and other current election results and how it affects our work.  Right now it looks as though Prop 2 will pass 51-49% with 93% precincts reporting.  The raw numbers show how close this is (as of 02:30am ET):

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The 4 Questions:

"During your child's end-of-life care period, did you or a family member ever consider asking someone on the care team to give him/her or give you or the family member medications to intentionally end his/her life?”

"When your child was receiving end-of-life care, did you or a family member ever discuss intentionally ending his/her life?"

"Did you or a family member ask someone on your child's care team to give him/her medications or to give you or the family member medications to intentionally end his/her life?"

"Did a member of your child's care team give your child medications or did you or a family member give him/her medications to intentionally end his/her life?"

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19 (13%, about 1 in every 8) said they had thought about asking a doctor to hasten their child's death

13 (9%, almost 1 in every 10) actually discussed it with caregivers

5 (4%) explicitly asked a clinician for medications to end the child’s life

3 (2%) reported that their child’s life was intentionally ended with medication. In all three cases the medication used was morphine.

36% (49 of 136, about 1 in every 3) in retrospect, would have considered discussing HD under certain circumstances with a breakdown of scenarios given.

Uncontrollable pain was the most common circumstance to elicit a hypothetical consideration of HD. 15% would have considered HD for non-physical suffering.

Only 2 parents would have considered HD in circumstances not directly related to the child’s experience, (family witnessing suffering or medical costs).

94% endorsed proportionately intensive symptom management for a terminally ill child with uncontrolled excruciating pain, while only 54% did so in the case of coma; these results did not change when adjusting for race and religiousness.

50% (1 in every 2) endorsed HD in at least one vignette. 59% would agree with a physician discussing HD in the case of a child with terminal cancer in pain or coma.

Of the 19 who considered HD during their child’s EOL course 16 (84%) endorsed HD in vignettes.

In general, being white (not Hispanic) and being not very religious were associated with endorsing HD in vignettes.

Dussel V, Joffe S, Hilden JM, Watterson-Schaeffer J, Weeks JC, & Wolfe J (2010). Considerations about hastening death among parents of children who die of cancer. Archives of pediatrics & adolescent medicine, 164 (3), 231-7 PMID: 20194255

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I remember a discussion with a teenager with cancer and his family regarding treatment options and prognosis.  He was open to discussing these matters and even initiated a lot of the discussion and questions himself.  At one point I told him that I wouldn't give him a "B.S. answer".  He replied, "You can really say 'bullshit.'  You don't have to abbreviate that word.  We know what it means.  Just say it."

Given the increase in adult medicine staff seeing pediatric patients in palliative care, it is nice to open my wife's Pediatrics journal and see many different articles pertaining to palliative care.  I remember a year or two ago, there did not seem to be that many.  Regardless of the increasing number of relevant articles in the journal, they still do not have a palliative care heading in the 'Topic Collections' section (Ahem, AAP!).

There are a few articles in this month's journal, but I would like to highlight one that focuses on just the situation I faced above.  An end of life research group from The Netherlands and Belgium interviewed 83 adolescents (11-18yo) using a previously used survey on almost 2000 teens without chronic illness (school survey).  A few new abbreviations were introduced which I will use here for consistency with the original research article:

ELD = end of life decision
NTD = non-treatment decision (withholding/withdrawing medical treatments)
APS = alleviation of pain and symptoms

NTD and APS are types of ELDs.  Got it?  Ok, let's move on.

In addition to NTD and APS they also asked opinions about intentionally hastened death via either euthanasia (administered by medical staff) or physician-assisted suicide (administered by self).  As many of you are familiar with euthanasia and physician assisted suicide is permitted by law in Belgium and The Netherlands, but if you are under 18 you can not choose either of those options.  Although if you are under 18 and judged to be competent (by whom? it varies) you can make NTD and APS decisions.

The adolescent teenage survivors had over 80% acceptance/positive in regards to acceptability of NTS and APS decisions in a hypothetical terminal cancer patient scenario.  This was statistically significant compared to the school sample who had agreement rates in the 60% range.  The interesting thing is the school sample had nearly similar agreement rates for NTD, APS and euthanasia possibly indicating the confusion about these very different approaches which exists in adults and in the US.

I think a very profound and helpful finding is that 96% of the cancer survivors agreed that a child with terminal cancer has the right to know that s/he will die soon.  Obviously for parents and medical staff this could be a very difficult thing to consider sharing with a dying child, but the possibility for wanting to be informed is quite high it therefore behooves us to at least inquire to the patient's wishes.  They may not want to know right then, but at some point prognostic discussion helps inform what treatment decisions they may wish to pursue.

Pousset, G., Bilsen, J., De Wilde, J., Benoit, Y., Verlooy, J., Bomans, A., Deliens, L., & Mortier, F. (2009). Attitudes of Adolescent Cancer Survivors Toward End-of-Life Decisions for Minors PEDIATRICS, 124 (6) DOI: 10.1542/peds.2009-0621

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A letter from a group of concerned doctors, including Dr. Peter Hargraeevs, a London-based palliative medicine physician, to the British Telegraph newspaper is raising concerns over the UK's National Health Service (NHS) implementation of a protocol called the Liverpool Care Pathway.  The letter asserts:

Lau F, Maida V, Downing M, Lesperance M, Karlson N, & Kuziemsky C (2009). Use of the Palliative Performance Scale (PPS) for end-of-life prognostication in a palliative medicine consultation service. Journal of pain and symptom management, 37 (6), 965-72 PMID: 19232892

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Montana v. Baxter was argued in front of the Montana Supreme Court this week as a appeal to a lower court ruling that the state constitution does not necessarily prohibit someone from medically hastening their expected death.  With all the concern about hastened death in the news, I figure all Pallimed readers should be up to date.  I won't go into too any more detail on this one other than to say Thaddeus Pope at Medical Futility and Jessica Knapp at The Good Death can tell you all you need to know historically and currently.  No decisions have been made at this point.

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ProPublica (in conjunction with the New York Times Magazine) has published an excellent analysis of the conditions in Memorial Medical Hospital in the Hurricane Katrina aftermath and flooding. Dr. Sherri Fink reviews the system issues as well as the human factors in an in-depth analysis. It is gripping reading which makes you feel as if you were in the same horrible conditions Dr. Anna Pou and the rest of the care team faced. It was clearly a tragic situation where 45 people died in awful conditions, the least we could do is learn from this awful story. Interestingly there was a physician named John Thiele who is a pulmonoligist but apparently trained in palliative care as indicated by this passage:

"Thiele practiced palliative-care medicine and was certified to teach it. He told me that he knew that what they were about to do, though it seemed right to him, was technically ‘‘a crime.’’ He said that ‘‘the goal was death; our goal was to let these people die.’’"

Topics covered in the article particularly relevant to palliative care include:

• the role and varied meaning of DNR orders
• the administration of morphine and/or versed as a potential cause of death
• the role of medical professionals in civil emergency and potential liability
• patient centered care and the difficulty of informed consent in emergencies
• the ethics of rationing medical resources (medicines, personnel, technology) in emergency
• the role of the chaplain and others for staff support
• the meaning of dying with measurable opioids in your blood
  
• the selection of a triage protocol when mortality risk is high
• the difficulty of prognostication and it's role in every medical decision
• the role of double effect

Here is an excerpt that will probably make any palliative care clinician cringe:

"Doctors, nurses and clinical researchers who specialize in treating patients near the ends of their lives say that this ‘‘double effect’’ poses little danger when drugs are administered properly. Cook says it’s not so simple. ‘‘If you don’t think that by giving a person a lot of morphine you’re not prematurely sending them to their grave, then you’re a very naïve doctor,’’ Cook told me when we spoke for the first time, in December 2007. ‘‘We kill ’em.’’"

See I told you that you should read it. Read the whole article before casting any judgments on the above quotes please.

We have covered the case of Dr. Anna Pou at Pallimed in the past here and here.