Thirty percent of an individual’s Medicare expenditures in the United States are spent in the last year of life, numbers that are very similar to here in Canada. This, in my opinion, represents a fundamental flaw in our medical economic system and culture. As a soon to be critical care fellow at McMaster University this phenomenon is very evident in my day-to-day practice. Cutting edge medical interventions, heroic measures, and life support systems although incredible in their potential to extend survival are not appropriate for application to all patients. This is where the most evident of misconceptions exists for a good proportion of the general public. Although we have the ability to intubate your 96-year old mother and send her to the intensive care unit (ICU) on a ventilator and initiate hemodialysis for her renal failure does that mean we should? This ethical conundrum is one that comes up repeatedly in hundreds of ICUs around the country each day.
Futility of care may be obvious to the seasoned critical care physician but to the family experiencing this situation for the first time their only prerogative is extending their time with their loved one, not necessarily focusing on the quality of this borrowed time. Physicians act objectively, substitute decision makers (SDMs), often lacking malice, more easily get overwhelmed by emotion. Physicians are able to see that “doing everything” with little hope for a meaningful outcome can on a larger scale impact our tenuous healthcare economics. As an example an ICU bed alone costs the health care system around $2500 per day when physician and nursing fees are included. Tying up medical resources in situations where they are not best used may prevent them from being available for the situations where they are most needed. These disagreements between the treating physician and the SDM concerning end-of-life care are probably the most difficult challenges faced by most intensivists on a daily basis. In contrast, the management of medical issues such as electrolyte disturbances, low blood pressure or severe infections seems straightforward.
So how best to resolve these discrepancies that can exist between SDMs and the medical team? In these emotionally charged situations tensions often run high. Conflict can easily erode the important therapeutic relationship between the physician and patient’s family ending any hope for mutual resolution. Legal intervention, although an option, hardly ever brings closure. A recent case at Sunnybrook hospital (Rasouli vs Sunnybrook Health Sciences Center) involving just such principles went all the way to the Ontario Court of Appeal with a final decision that offers little in the way of precedence or guidance to families or physicians. I have heard and understand the “slippery slope” argument. Allowing physicians, hospitals or governments to dictate end-of-life care could be a dangerous precedent. Families and SDMs need to be included in the process, patients’ advanced directives (if present) need to be considered and consensus should be the goal. That being said, our current structure is not sustainable. We need to work better as a society and as a medical community ensuring that the medical care we provide, especially in the setting of end-of-life care is not only state-of-the-art but practical, economical and therefore ultimately in the patient’s best interests.
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Brian: Because the bioethicists and the Congress of the United States will not talk openly about the connection of “medical futility” to “fiscal futility” and the discrimination that is supposedly prohibited in the 1991 Patient Self Determination Act of 1991 (PSDA) is never prosecuted or prevented, many elderly patients in the United States are NOW being sent to eterminty earlier –rather than later — and without their informed consenr. DNR/DNI code status becomes a financial tool for the hospitals who are generally NOT reimbursed for ICU and CCU expenses for elderly and terminal patients under current CMS Reimbursement protocols.
Hospice and Palliative Care passed into law in 1986 together with the PSDA were supposed to be the solution to the lowering of EOL costs for the elderly on Medicare and Private Insurance policies.
Physicians, unfortunately, were not put under the provisions of the 1991 PSDA and are not mandated to seek informed consent for the lower standard of care (palliative) in the OUTPATIENT setting as opposed to “curative” treatment that then translates to palliative care in the INPATIENT setting that does not provide and pay for life-saving or life-extending procedures for elderly, terminally ill Medicare patients. Apparently, physicians didn’t want the legal burden of seeking informed consent for two different standards of care, i.e., palliative or curative in the outpatient or the inpatient setting. Not only would this have been an expensive legal burden, but if there were truly informed consent to one standard or the other of pallitive or curative care, etc… this might impact profits when more elderly and terminally ill patients would elect to forgo any treatment at all.
If patients were educated by physicians as to the realities of their terminal conditions and the consequences of treatment OR NO TREATMENT, most elderly and competent patients would make this decision in their best interests. The law NOW supports the rights of patients, including the very elderly, to make the CHOICE of whether or not to shorten their lives to avoid further suffering or to extend their lives to fight to live longer. The law has not yet removed the rights of elderly patients to determine for themselves that “they are better off dead, sooner rather than later.”
You seem to be arguing for the right of unilateral decisions that are NOW influenced by fiscal futility concerns for the hospitals who are NOW NOT being reimbursed by Medicare and the Private Insurers for ICU/CCU time for elderly patients if these patients have exceed Diagnosis Related Group (DRG) caps.
These DRG caps are ad hoc discrimination by our government Medicare against elderly and terminally ill patients who are being treated for late stage cancers and this is why, in my opinion, the discrimination that is prohibited in the PSDA has never been prosecuted for the over 20 years that the PSDA has been in existence.
There is, of course, NO PRIVATE RIGHT OF ACTION, under the terms of the prohibited discrimination of the PSDA, so perhaps the unilateral overt asnd covert DNRs and the epidemic of DNRs in the hoispital charts of the elderly was premeditated in the law? Who really knows? .
In a closed medical system, meaning we are not allowed alternative care options such as in the USA, the government does not have the right to dictate who gets what. If they want that right then they have to allow us to choose/have the ability to go else where if we don’t agree with their decisions.
Haresh, I apologize for being a bit rhetorical in my comment. I need to learn to not do this – it doesn’t translate very well in writing.
Of course health care isn’t free. It is 47 cents of every dollar spent by the provincial government. But we all behave like it is free. Patients have no idea of the cost of delivering care and doctors seem to rarely if ever think about cost in the delivery of care. Do we know what an MRI really costs? A Cardiac Stent? A serum Calcium? A silicone catheter? We don’t – partly because we never had to know and mostly because we don’t want to know I”m afraid. I think we need to train doctors to become health care professionals, not just clinicians so they can become wholly part of the system, understanding quality in all of its perspectives including value, efficiency, and equity.
I also agree with your comments about the biomedical industry, and they also extend to the pharmaceutical industry. It’s ridiculous the amount of money that things cost just because they are “medical”. It is obscene. And the companies are advocating for more and more things to be thrown out instead of reused – and the economic conflict of interest galls me.
This is a very interesting thread, and obviously only small segments of this can be handled in a short comment. I will focus on one comment, that of Mark. He says:
“These are all huge ethical questions where the needs of the community need to have at least as much importance as the needs of the individual.”
As stated of itself, this is something I can quite agree with. One can posit that the community’s mores & philosophy gets the health care it deserves. The interpetation I would give Mark’s statement is that there needs to be a very broad ranging community-level discussion about health priorities and needs. That forum is not visible to me at the moment, but I may be simply unaware of them.
Here Mark and I seem in full agreement as he also says:
“We do need to have a discussion about the relative balance of the social need versus individual need and about at what point the need of the herd trumps the want or desire of an individual”.
However, possibly there is another contextual framing for Mark, which in reality is cost constraint:
“Part of the problem is we all have developed a sense that we are entitled to health care, as much of it as we want. Because it”s free, isn’t it? Of course it isn’t. It only is if there is more than enough resource for every one to have all of what they want” .
This a little more difficult for me to agree on. So, how is it “free” in any case? Are not taxation monies a “payment”? Are considerations of the 1% vs the 99% (a nice and convenient short hand to denote the matter of inequity) irrelevant? Using that paradigm of ‘free’ – in my view, effectively preloads the discussion.
If such a hypothetical ideal discussion ever does take place, it will be useless unless all players are transparently present. This includes the bio-medical-industry itself which in some circumstances has fueled the apparent aspirations of the community.
A concrete example: Talking about “earlier premature babies” – without invoking societal and job stresses on the working mothers; and the role of the techno-wizards of in-vitro techniques, cannot be truly relevant, in my view at least.
In passing, this forum with all its participants – is always thought provoking. Congratulations to the editors.
Haresh (A neonatologist)
Thank you for posting this. Can you help me to understand how “practical and economical” translates into “best interests” of the patient?
Contemporary ethical disputes typically play out as debates between Christian moralists and Charles Darwin. The former asserts the immortality of the soul and sacredness of human life, whereas the latter emphasizes the atomistic, secular “morality” which uses individuals for broader evolutionary goals, dictated by instrumental reason (read: utility and economics). Eternal afterlife vs. earthly immortality, if you will. As much as technology has enabled us to realize the idea that we want the world to be made in our image, it has also taken on its own momentum, dictating to us in turn. It’s brought with it entitlements and the anomie of individualism. End of life care, of course, deals not only with economics and practicalities, but also core personal values that structure how lives are lived and can enable self-determination in their ending. At the heart of the issue, I think, is the moral, socio-political, and biological determinisms that perpetually drag the past one step further into the future, seeking to preserve tradition in an attempt to realize an ideal (Christian) future. Current practice sees some bodies lying in wait in hospital as a testimony to the “sanctity of life” so that others are free (and comfortable) living in the world of potential and hope, as productive bodies that are tied to the present. From my vantage point, it’s the mischaracterization of “sanctity of life,” recast and borrowed from Christian morality (a gift without a gift-giver, or a liberal tolerance of respect and neutrality), that, far from enabling us to ordinate our values, becomes further entrenched as the “highest good.”
Well said – The National Advance Care Planning Task Group is working to raise awareness of the importance of advance care planning to Canadians – not just an advance directive, but real and ongoing conversations with their Substitute Decision Maker and family members to give them the confidence to make decisions and advocate for them during a traumatic time. We believe that these conversations are the most important component of advance care planning and will help both patients, families and health care professionals work together towards the common goal of doing what is best for a fellow human being.
http://www.advancecareplanning.ca
Part of the problem is we all have developed a sense that we are entitled to health care, as much of it as we want. Because it”s free, isn’t it? Of course it isn’t. It only is if there is more than enough resource for every one to have all of what they want.
We do need to have a discussion about the relative balance of the social need versus individual need and about at what point the need of the herd trumps the want or desire of an individual. It’s an important and fundamental discussion. In the arena of futile medical care it becomes even more important. Do individuals have the right, or do their families have the right to demand futile treatments for themselves or others while at the same time that very action deprives others of care that might well be very effective and or absolutely necessary? ICU care, fourth and fifth line chemotherapy, earlier and earlier premature babies. These are all huge ethical questions where the needs of the community need to have at least as much importance as the needs of the individual.