Death with Dignity Forum, March 17

I am participating Thursday, March 17 in a public forum discussing pending “Death with Dignity” legislation in the North Carolina General Assembly (Thursday, March 17, 4-7pm, Friday Center in Chapel Hill; free but registration required).

I don’t consider myself an expert on the topic of Assisted Death* (where the patient must administer a lethal dose of prescribed medications; that is the topic of the forum Thursday, and is the basis of the Oregon law) or Euthanasia (where a physician administers a lethal dose of medication; illegal in all U.S. states, but legal in some European countries), but do focus most of my research attention of hospice, palliative care and how we care for persons with disability. I am a member of the “Death with Dignity” panel to discuss how we care for the dying generally in the U.S.

I am ambivalent about Assisted Death legislation–meaning I have conflicted views and can see the issue from both the pro and con positions. I suspect most other panelists have quite strong views, either for or against. This got me to thinking about the most convincing case I have read about the pro and con positions as someone who remains ambivalent.

There is not a singular “pro” piece I can point to, but instead it is the fear of a future unremitting suffering for myself and my family (this worries me most–that I will burden my children) merged with my current position in life that leads me to see the “pro” point of view. By current position in life, I mean that I am a person with prestigious job and career status, power, good economic means and someone who is generally used to things going roughly speaking how I wish them to go. And if they aren’t going as I wish, I have a general sense that I can do something to change the course of events. The “pro” position of maintaining my options is quite intuitive to me.

This from Katherine Sleeman, a Palliative Care physician in England from the Cicely Saunders Institute, University College London is the most convincing, succinct argument against Assisted Dying laws that I have read. I won’t summarize it–it is short, so go and read it. The piece is effective and convincing in arguing against Assisted Dying legislation to me because it doesn’t treat the issue as a simple one, and also because it notes how much work there is to do to improve our systems of caring for sick and infirm citizens regardless of how this issue is decided.

In that sense, the issue of Assisted Dying is far from the most important end-of-life topic of our day, and the noise around this debate crowds out the most important issue as I see it–developing coherent systems of providing the care that most of us will need before we die. The basic policy milieu available to the dying and their families will effect far more persons than any Assisted Dying law ever would. Let’s not forget that.


*A fight of the language of how to even talk about this is possible, but not so useful. I think Assisted Death is the most descriptive term. The law being proposed is called “Death with Dignity” which is a more positive framing, and opponents will sometimes call this anything from killing to murder, which is obviously a less positive framing. My two cents.

N.C. Medicaid Reform Waiver Draft

The North Carolina Department of Health and Human Services released the detailed outline of a proposed Sec 1115 Medicaid waiver request yesterday, doing so much earlier than the June 1, 2016 deadline imposed by last year’s budget. I am travelling in England and haven’t given it a read, but will get back with thoughts as I am able.

Rose Hoban is a great source of news on this and all things health policy in North Carolina.

“This is really the end of the beginning; this is the first hurdle,” said Dee Jones, who was hired to lead the new Division of Health Benefits, which will run the new Medicaid program. “There’s a lot of work to be done.”

Hospice and its role in the health system

The WSJ has a piece focusing on the increasing use of hospice among Medicare beneficiaries with dementia that observes that the long stays of such patients has increased the cost to Medicare as compared to the shorter, more predictable stays by persons with cancer, for example.

Between 2005 and 2013, about 107,000 patients received hospice care for an average of nearly 1,000 days spread out over four or more calendar years, according to a Wall Street Journal analysis of Medicare billing records. They cost Medicare 14% of its overall hospice spending, even though they accounted for just 1.3% of its hospice patients.

Undoubtedly true, but what does that mean?

Here is a paper published 12 years ago noting the problem of the poor quality of life of patients dying with dementia, and suggesting that hospice could care for patients with more than just cancer. We addressed one problem (poor quality of life for those dying with dementia) and created another (longer stays in hospice for patients with dementia). And the cost issue that is the hook of the WSJ piece has always been paramount for hospice because it was sold in the early 1980s at least partly based on its ability to reduce costs as compared to normal care, which has been shown to be the case for more traditional hospice users (but not for very long users). Cost is a fair metric, but why should hospice be the only part of the Medicare program expected to improve quality of life and save costs? That is quite a standard.

The problem that is missed in the WSJ framing is that the United States does not have a coherent long term care financing approach (there are echoes of this in the story–but it is the most important thing to understand about this story in my opinion).

Families self finance LTC with their wealth and time, and when there is no more wealth, Medicaid pays for the elderly to live in a nursing home until they die. There are myriad problems with this approach, and Medicaid pays for about half of all nursing home days in the United States. The lack of a coherent LTC system in this U.S. shows up in all sorts of places–long hospice stays, readmission rates, persons in NHs when they could be cared for at home, etc. and we try to fashion fixes for these ‘canaries in the mine’ that miss the underlying problem.

Long periods of hospice use for home based patients with dementia (and other diseases) are more directly signals of the lack of a coherent LTC financing approach. The WSJ highlights such a patient:

Helen Blincoe, a 100-year-old from Loma Linda, Calif., bounced in and out of hospice care from 2009 until last year. Currently, her main health problem is dementia, and she is in relatively stable condition. On a recent day, she sat upright in an easy chair, her walker nearby.

During the nearly 850 days she spent in hospice care, her services consisted mostly of visits by home-health aides. Nurses and social workers also saw her, but less frequently.

Hospice was not envisioned for an 850 day stay. The country has most certainly not envisioned how 70 year old daughters care for their 100 year old Mother who is a widow. I will go out on a limb and say that the hospice care paid for this person is almost certainly the most valuable thing the Medicare program could pay for on her behalf. The fact that her care doesn’t fit into the Medicare hospice benefit and that there is not a ‘high touch, low tech’ LTC benefit shows that Medicare’s benefit package doesn’t cover what is most important for many of its beneficiaries.

What to do? A preferable approach would be flexibly provided support that enabled patients to stay in their home, likely reimbursed at a lower per diem rate than what hospice pays per day. Covering what I call “high touch, low tech” home based services are what many elderly persons need, and past work we have done at Duke suggests Medicare beneficiaries would be willing to forego some medical treatments to get such care.

Hospice isn’t perfect, but the most obvious warts are at least partly driven by having the health insurer of elderly persons in the U.S. not cover LTC. We need to address this problem head on.




North Carolina’s Redistricting Mess

A federal trial court recently ruled the 1st and 12th Congressional districts in North Carolina to be illegal due to their being drawn on a racial basis, and the court ordered that they be redrawn within 2 weeks (and before the March 15, 2016 primary in which absentee votes have already been cast). The State has appealed to the Supreme Court for a stay of the ruling and a decision is pending.

The N.C. General Assembly held a public hearing today to prepare for a rapid rewriting of these two Congressional districts later this week. There was also an option of supplying written comments to the Redistricting Committee with several hundred persons doing so.

I submitted a comment, that is reproduced below.

The heart of redistricting is the same today as when the Dems ran the state. The winners pick districts to help them remain winners. The BIG difference is the Dem party had ideological diversity when they ran the state. The Dem hold seemed impossible to break but it broke. Your hold will also someday break. Use this ruling to not only come up with a short term solution to hold and election this year (which you must do of course), but to find a route to a 2020 plan that is a bit more bipartisan and reasonable. You guys wont hold the reins as long as the Dems did, BECAUSE they had far more ideological diversity than you do, and so better represented the state.You need to come up with a way that charts a new approach, and in doing so you will deserve credit for doing something high minded and for the best interests of the state. You will also make it better for your party when do you go back to the minority, which of course will inevitably happen some day. I am unsure of the best way to draw lines. There are models. I do know that my mother in Goldsboro being in the 1st, and someone who lives less than a mile from me also being in the 1st (I am barely in the 4th) makes no sense. Respectfully, but clearly submitted because I know you are all busy.

This post from June, 2013 has a bit more about the difference between the current one party Republican rule as compared to the multi-decade Democratic party rule in North Carolina.

Rounding out the Moon Shot

It was a great honor for Vice President Biden to visit Duke to discuss the cancer “Moonshot” initiative that he is leading. The language of curing all cancer has given way to more realistic, though plenty bold talk:

Biden said he was not naïve enough to think that all cancers can be cured but pointed out there’s a growing consensus among scientists that “we really are at an inflection point.”

“The science is ready, it seems to me,” Biden said. “Much more has to be done, but I believe we can make much faster progress.”

Our culture will always gravitate to metaphors of war, victory and complete triumph, and so we need to make sure we round out the moonshot to include other places where the science is also likely at an inflection point. Key issues:
  • How to we improve communication of options to patients and families so they can have a role in deciding what therapies and care are best for them?
  • Developing a more coherent system of providing high touch, low tech care that can help patients and families live best. There is some evidence patients are ready to engage treatment tradeoffs. And if we wiped cancer off the face of the earth….there will be an explosion of heart disease and stroke morality, and the caring needs of humans will always be central to our life experience.
  • There was lots of discussion yesterday at Duke about information sharing and determining when the federal government does and does not have a role. A practical information expansion where the federal government does have a role is making available claims data from Medicare Advantage plans to researchers. They are now generally unavailable, so that means the claims data for around 3 in 10 elderly persons in the U.S. cannot be included in research. Making the data available won’t cure cancer, but it could make data sharing efforts like the one described by UNCs Stephanie Wheeler more readily replicable nationally.

I don’t know the correct mix of how the Moonshot resources should be invested. We just need to make sure we round out the discussion of the choices facing our nation: basic science, innovation in treatments, clinical investigation, how to communicate to patients, and how to provide systems of caring that will be needed by patients and families regardless of what disease(s) people eventually die from.

Talking Medicare End of Life Policy Changes

I was on WUNC’s program The State of Things yesterday talking about changes to Medicare end of life policy. About 12 minutes.

Right to Die Debate

Most of my research focuses on hospice and palliative care–so I think, study and talk a great deal about death. Invariably when I give a talk about hospice and palliative care policy, someone asks about physician assisted suicide. This surprises me because I see them as quite different, but I guess it shouldn’t since it keeps happening, especially if non researchers (normal people) are in the audience.

A flip response by someone (me) who feels quite morally muddled about physician suicide is to say something like “if we have better hospice and palliative care, then no one would be interested in physician assisted suicide.” I have said this in response to questions about physician assisted suicide and the right to die movement, but I don’t really think I fully believe this to be true.

I remain muddled on this issue, however, I do think this piece by Kevin Drum is the most coherent and honest thing I have ever read on the topic and I commend it to you.



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