In a new special issue of Health Affairs focused on health care around the end of life, we see that health care costs rise as patients approach death and/or after they are diagnosed with a life-limiting disease. This relationship holds across many diseases, ages, and types of health care systems and countries. Whether describing the cost-savings associated with palliative and hospice care, training primary care physicians to have conversations about prognosis and care planning, or the need to better understand patients’ preferences for treatment or comfort, most the papers in the issue take an optimistic stance regarding the impact of informed patient choice and transparency. That is, if only the barriers to real communication could be brought down or the proper incentives established, inappropriate care at the end of life would decline dramatically. As I’ll explain, while some optimism may be warranted, there are many forces pulling in the opposite direction.
What all these strategies for better end-of-life conversations have in common is the assumption that if people talked realistically about their prospects and preferences, or if physicians could take the time necessary to explain things clearly, patients and families would come to accept their prognosis and not seek costly treatments; they would avoid intensive care units (ICUs) and accept palliative and hospice care earlier in the end-of-life process. There are significant barriers, however, to shared decision making in the face of unfamiliarity and ambiguity. Simply understanding prognostic predictions requires sophisticated numeracy, which most of us don’t possess. Physicians’ approach to practice and communication style are other important variables that go into the mix.
Over the last few decades, improving advance care planning has been the mechanism widely promoted to ensure that patients receive the type of end-of-life care they want. Whole communities have been the targets of “The Conversation Project,” a program that encourages families to establish an actionable plan for end-of-life care. Since physicians are so often in the position of explaining to their patients what a diagnosis means and what treatment options are available, numerous programs have been directed at improving their communication skills on these delicate topics, all with the goal of reducing the rate of inappropriate end-of-life care. Increased access to palliative care, concurrent with disease modifying treatment, has also been advocated to allow for patients’ gradual transition from costly, aggressive treatments with limited chances of arresting disease progression.
However, it is likely that all physicians have had more than one patient caught in a paradox of understanding their prognosis while not being able to internalize its meaning for their own lives. They continue to live with some degree of denial and make choices as if each new sign of worsening disease is a minor setback or side effect from which they will recover. While this is probably more prevalent among younger patients, families of older patients sometimes play the role of “denier by proxy” — continuing to press for treatment long after health care professionals (and at times the patient) think warranted.
Since stated advance care preferences are acknowledged to be unstable over the course of an illness, physicians are likely to be wary of making assumptions about what patients want as they approach end-of-life health care decisions. Many physicians will remember a surprise remission or recovery and may be loath to propose options that preclude that same opportunity to another patient lest they feel responsible for a terminal phase that could have been delayed. Any indication of patients’ ambivalence might lead physicians to offer treatments that might not be offered were there no ambiguity. Physicians’ fears of foreclosing options may be as great as those of patients and families, so all conspire to do what the other wants.
This natural ambivalence is amplified by very real changes in the effectiveness of treatments for even advanced disease. Even though small and incremental, there are enough examples to shift the tone of the discussion, engendering doubt about patients’ resolution to forego further treatment. Personalized medicine, with molecular or genetic targeting, has achieved some tantalizing successes, raising hopes of patients and physicians alike while complicating discussions about palliative and hospice care.
Perhaps in consideration of this discussion, we should be more tolerant of the slow progress advance care planning has made and the difficulty of getting physicians to have in-depth and definitive conversations about care preferences. It may not just be the inadequacy of the financial incentives or the poor training physicians receive in holding such conversations. Nor is it necessarily the fractionated process of referring patients from one part of the health care system to the other that keeps patients from hospice. Ambivalence, hope, and denial may all serve to alter our willingness to make definitive decisions to stop treatment and to embrace palliative care. This combination can undermine patients’, families’ and physicians’ decisions to pursue palliation and comfort care. This makes it so much easier to fall into the inertia of ongoing treatment, hospitalization, and even ICU admission, particularly in light of the growing availability of such services.
If this is the case, our calculus about cost savings from advance care planning, physician training, and palliative care may not be as large as research suggests. Patients, families, and physicians volunteering to participate in research studies may not be representative of the entire population approaching end-of-life decision making. While research clearly points to a way to reducing inappropriate care at the end of life, in the US, at least, these initiatives are unlikely to put a halt to the relentless rise of disease-oriented treatment at the end of life in the foreseeable future. Financial incentives in our health care system conspire with the legitimate reluctance of patients, families, and physicians to give up hope for life extension.
On the other hand, there is reason to be somewhat optimistic since the changes discussed in this special issue of Health Affairs are prone to make a difference. However, the scope of the difference is likely to leave plenty of room for further interventions, although what types these will be remains to be seen.