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Diane Meier just tweeted: “60 minutes misses the point- palliative care is about matching treatment to patient goals, NOT stopping it.”

The central question raised by the 60 minute episode and subsequent discussion: how should costs fit into the conversation about end-of-life care? Various positions:

1. We should focus on reducing costs at the end of life. Costs of care at the end of life are outrageously high. We should limit spending on “unnecessary” expenditures that do little to prolong life. As a side effect, we will reduce suffering.

2. We should focus on reducing suffering. Many of the life-prolonging interventions at the end of life (e.g. mechanical ventilation, ICU stays, ED visits) cause suffering. As a side effect of reducing suffering, we will reduce costs.

3. We should focus on informed choices: matching patients care to their goals and values. Many patients do not realize alternatives exist to high intensity life-prolonging care, such as care focused on maximizing quality of life. If more patients were informed, more people would opt for care focused on quality rather than quantity of life. As secondary effects, greater emphasis on informed decision making would reduce costs and suffering.

Costs are central to the argument in position 1. Reduced costs are ancillary benefits to positions 2 and 3. These are not necessarily mutually exclusive positions. Someone could argue that the three goals of reduced costs, reduced suffering, and promoting patient choice are equally important. That said, each argument has a different policy implication. For example, an argument based on costs leads to a policy of rationing. An argument based on promoting informed choices leads to funding for advance care planning (I like this term better than “end-of-life” counseling).

Furthermore, each argument arises from a different ethical principle, and there may be reasons for arguing that one principle should take precedence over the other. The argument for reducing costs arises from the ethical principle of justice. By paying such high costs at the end of life, we reduce our ability as a society to pay for other potentially beneficial treatments. For example, if even half of the $50 billion dollars (number from 60 minutes) spent on care in the last month of life were spent on reducing social determinants of disease (e.g. smoking and obesity), this money could conceivably lead to a tremendous improvement in the overall health of our society. More realistically, if we do not contain spiraling costs, we will not be able to pay for other needed government programs, like schools. The central challenge to this issue is that rationing must be accomplished on a societal/political level, not the bedside, yet well publicized personal stories of denied coverage often trump reasoned arguments in social/political debate.

The argument for reducing suffering arises from the ethical principle of beneficence and nonmaleficence. Health care systems and individual providers should refrain from providing care that is known to be ineffective or cause harm. The challenge here is that what constitutes “suffering” or “quality of life” is highly subjective. Older adults who survived ICU admissions rate their quality of life higherthan their family members do. Making judgments at a physician or even health policy level about what constitutes “suffering” smacks of paternalism, and many will be uncomfortable with this argument.

The argument for promoting informed decision making arises from the principle of respect for patient autonomy. Patients have a right to be informed of the potential for suffering with high intensity life-prolonging care, limited potential life-prolonging benefit, and alternatives such as care that focuses to a greater extent on quality of life. The challenge here is that while patients have an established right to refuse unwanted treatments (a negative right), some patients claim the positive right to receive specific drugs or interventions. In part, this has led some (such as Andy Billings) to say that “autonomy [has] run amok.”

If I have to take a stand on what I see as an essentially normative ethical issue, I would argue that promoting informed patient choices should be the objective of the palliative care community (one could make a similar argument about the geriatrics community). While reducing costs and reducing suffering are laudable goals, for both ethical and pragmatic reasons, they are unlikely to be successful in today’s political climate.

I also believe that these issues are inextricably intertwined. How we (we meaning the palliative care community in this case) promote ourselves and address the cost issue depends on our audience. Hospitals and health systems see palliative care clinicians as cost reducers and referring providers see us as reducers of suffering. Costs savings mean little to referring providers, and reducing suffering means little to health systems (I’ve heard Diane Meier say of reduced suffering as a goal in and of itself, “that and 50 cents will get you a cup of coffee”). We need to demonstrate cost savings to grow outside of the inpatient and hospice settings. We need to demonstrate reduced suffering so providers will refer patients to us. And for ourselves, for our patients and their families, we need to say honestly that we are helping them navigate serious illness with the goal of promoting their best interests.

Thanks to Barbara Brown for her excellent post and stimulating discussion that lead to this post. I also recommend reading this seminal article about the high costs of care at the end of life; I re-read it recently and found it fascinating and thoughtfully written. Finally, thanks to Bernie Lo for his book Resolving Ethical Dilemmas, which I used today as a reference.

This Post Has 9 Comments

  1. I think that among the three "strategies" for addressing problems in end-of-life care (#1 aim at cost reduction v. #2 aim at reducing suffering v. #3 aim at informed choice) it's a pragmatic complete no-brainer. #1 will backfire faster than you can say "death panels" and we'll be even farther than ever from getting real change. #2 is way too limited (though I would strongly urge the medical profession to support physicians, as we successfully do at Beth Israel Deaoness in Boston, in simply declining, compassionately but unwaveringly, to administer treatments that in their professional judgment are inhumane — i.e. "bad medicine"). #3, which I expect will be the dominant framing of the forthcoming report of the Mass. Expert Panel on End of Life Care that I'm chairing, is hard for me to see how anyone can be opposed to. And it's exceedingly likely that even if some people with fully informed choice choose highly-expense low-yield life support efforts, on average we will see a significant move toward either lower cost palliative care/hospice pathways, or to a set of mixed palliative/life-prolonging pathways that are no more expensive than our current patterns, and almost for sure significantly less choice of pathways that involve significant suffering with little or no life prolongation. More informed choices, better quality in terms of patients own values and goals, at same or lower overall cost to the system.

  2. Thanks Lachlan, appreciate your comments. I agree it's hard to see how anyone can be opposed to the informed decision making argument. Still, the trick will be to show that the policies this strategy supports actually do lead to better quality and reduced costs. While these are secondary effects of the strategy, they are necessary for the strategy to succeed.

  3. I would agree with Lachlan Forrow that option 3 will likely be the most dominate framing model, if it isn’t already. I would put a greater emphasis in the description of option 3 that an "informed decision" is really a shared decision using both the knowledge and expertise of the health care provider, as well as the goals, values and preferences of patients & families. Option 3 means I remain as the advocate for the patient. It does not though account for cost except to minimize the direct cost to the patient or their family (or to choose a similarly effective intervention at a reduced cost to the health care plan or society).

    What I’m not sure of is what happens in the future as “cost creep” starts occurring in palliative medicine. It is still a young field but with every advancing year the field is developing more beneficial and yet costly interventions. Methylnaltexone is a prime example – it costs $48 per single dose vial to treat opioid induced constipation. Also, as palliative care goes further upstream, we will likely be advocating for use of high cost interventions if they are consistent with a patients goals and values. If a patient has cognitive changes due to brain metastases we may advocate for use of stereotactic radiosurgery at a cost of $100,000 a pop. This all leads to a future where one question must be raised: “what if high quality palliative care does COST money”.

    I remain steadfast that my role is the advocate and not the arbitrary judge on when an intervention is too expensive to society for me to recommend to an individual patient. Why should I say no to one patient who may benefit from sterotactic radiosurgery when the patient sitting next to him may be getting a $90K continuous flow LVAD device? We as a society need to decide where the line is when it comes to costs, something that doesn’t make for great headlines in today’s climate.

  4. How many of us, though, have "sold" new palliative care programs to our health care systems' business people by pointing out the potential for financial savings through (theoretical) decreases in high cost utilization? We should then not be surprised when they respond with cynicism or anger when we come back to them with requests for more resources to provide beneficial, but extremely expensive services needed to relieve symptoms.

    It is definitely time to change our strategy. I appreciate Forrow's emphasis on taking the ethical high ground for patient choice. But at some point, as a society, we will need to face the uncomfortable issue of when is too much too much. Is it reasonable to spend $100,000 for an additional month of life? How about a week? A day? We all want to relieve suffering and provide high quality care and I agree with Eric that as long as the "system" is built this way, I will continue to advocate to meet the needs of my patients. Like it or not, though, these issues need to be addressed and better that we be at the decision-making table than allowing the non-clinicians to decide for us and our patients.

  5. I actually think 60 minutes wasn't about palliative care – it was about end-of-life costs. They were making the argument that EOL costs might be lower if people choose to do things differently. That's all I really took form it. Because we (as a PC community) know Ira Byock to be a prominent PC physician, we may have made the inference that the 60 minutes was about palliative care ourselves. I think Diane Meier may have made this inference in her tweet as well. I actually loved Ira Byock's point that, at some point, life-prolinging care becomes delusional.

    I agree with the importance of a patient-centered approach when selling palliative care. I actually do all my work around patient-centered care but in late life decision making, there is one gaurenteed outcome for which there is no choice for the patient (or any of us for that matter). I think this is actually a point that makes true patient-centered care so much more difficult.

    Thanks again for yet another great article Alex.

  6. Hello adored GeriPal experts,

    What say you about the argument made by Margaret Morganroth Gullette at womensenews?

    From the outside, I say giving the elderly and terminal choice in end of life care changes the finances of Medicare completely. Many are currently coerced into treatment that they don't want or need.

    Further informing patients about services and treatments that don't work (say less than 5% efficacy drugs and painful treatments that won't prolong life) also prevents the medical industry from preying on our fear of death.

    As well, I am greatly discouraged by her discrediting of palliative and hospice care.

    It seems to me that this is the wrong way to talk about end of life choice and costs.

    Best, best!

  7. When I first began thinking about medical ethics and started using the "Georgetown Mantra" as a way to work through dilemmas, I quickly placed 'justice' at a level higher than myself as physician. 'Justice' here – deciding what is fair, what ought and can be covered, for whom – belongs within the purview of government or, perhaps, a healthcare system like Kaiser. I, as a member of such a system, should have an input, but not make decisions at the bedside. Saving 'the system' money is not my department when acting as someone's doctor. I think that's what you were saying, Alex.

    What I really wanted to say is that sometime in those early years, a wise teacher of mine pointed out to me that 'autonomy' and 'beneficence' needn't be opposed – it is beneficent to respect a patient's autonomy — a mini epiphany! Since then I have been pretty much in the the camp of 'beneficence,' if a camp needed to be chosen. Thus, I believe palliative care and hospice – in fact, ALL – healthcare professionals should focus on reducing suffering. That's our job! Of course, we don't just intuit the suffering, we need input from our patient and/or their surrogates and others. Since it is beneficent to respect autonomy, 'shared decisionmaking' (as Eric said) would be the ideal. If money is saved, great; if it must be saved, it is up to the system and it's 'citizens' (including us!) to do this job.

  8. Thanks for you comment L A Neumann (and thanks for your nice words on your blog, otherspoon). I read Margaret Morganroth Gullette's article twice and both times I found it difficult to understand her argument which spanned issues of age-rating in insurance premiums, to capitation, to an argument of hospice = palliative care = refusal/lack of treatment. This attempt to mix many different issues together to form some coherent argument seems to be very common when discussing health care reform – likely because it is a very complex issue. The problem is that it just doesn't work unless you have a very, very good understanding of the way the system works. Needless to say whenever anyone equates anything to a "true death panel" they have lost any and all credibility with me.
    What can we learn from this article? I guess that the impressions of hospice and palliative care are very much influenced by how we market them. If this marketing is focused on cost savings than we open ourselves up for this kind of commentary. If we focus on the fact that services like palliative care and hospice provide a higher level of care than anything else out there (where else except hospice can you get an interdisciplinary team to come to your home) we can begin to envision a world where "seriously ill Medicare and Medicaid beneficiaries might more often be steered toward palliative care". Sounds pretty good to me.

    (I also love Guy's comment. I am sick of people telling me that "such decisions should be made by doctors". Hope you don't mind Guy but I'm going to start using your line "saving the system money is not my department" (I'll cite you though).

  9. Thanks Lachlan, Helen, Guy, Dan, LA Neumann, and Eric for your thoughts.

    I've been musing lately about what Helen said – palliative care programs are sold as "cost savings," but some "palliative" treatments are expensive (e.g. radiation).

    I worry that by shifting our argument about costs to pander to different audiences, we lose credibility.

    Perhaps this is an awkward outgrowth of our multiple roles. As physicians, we must help patients make informed choices. As pioneers in palliative care, we must justify our field on the basis of costs. And as good and informed citizens, we must advocate for some constraints on cost – complete freedom of choice in health care is impossibly expensive.

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