Should New York State’s Medical Society Oppose Mandated End-Of-Life Discussions For Terminal Patients?

Mike Magee

Nearly 30 years ago, when the consumer health movement began in earnest, health professionals responded with extreme caution, concerned that their authority and control over patients and the health care system would ultimately be challenged. To the credit of most doctors, nurses and health care leaders, caregivers have evolved, accepting that the best patient is an educated patient and that mutual decision making leads to better decisions. (1) But as with all great sociologic movements, progress is not linear but filled with up’s and down’s.

Witness as a concrete example The Medical Society of the State of New York’s opposition to a new law enacted last week that requires physicians caring for terminal care patients to inform them regarding their palliative care alternatives including pain management and Hospice. The problem? A fear that the law provides a “legislatively designed standard of care” and would trespass “unnecessarily upon the patient-physician relationship”. (2) But the public advocacy group that drove the legislation said it was necessary because too often terminal patients and their families suffered needless agony and pain, as well as financial disaster pursuing expensive and invasive treatments that were neither helpful nor advisable. (3) Their not so subtle message to health professionals – get with the program!

This issue is not new. California has a similar law advanced for the same reasons. (4) And experts have well documented both the need and the challenge of getting physicians to come up to speed in modern management of end-of-life care. The reality is that change on the consumer side is ahead of change on the provider side for a range of reasons, one of which is financial. Consumers stand to lose from costly ineffective interventions while providers (including hospitals and health professionals) still stand to gain from perverse incentives. Absent a reasonable and voluntary pace of change, push has come to shove. But health professional societies opposing beneficial change based on a theoretical future threat certainly doesn’t place them in good company. What they should be doing is ramping up their knowledge of palliative care and reliably transfeering this knowledge to their membership and their patients.

As populations age in the United States, chronic illnesses create an uncertain medical future. By 2030, a fifth of the U.S. population will be over 65, and many will face the challenges of managing one or more chronic illnesses for a significant number of years, including physical and psychological distress, functional dependency and frailty, and a need for support. (5)
Traditional care systems are not particularly well equipped for this situation. For example, our medical system focuses almost exclusively on curing illnesses and prolonging life — goals shaped by the hard-charging interventional past. But in the new order, these two worthwhile goals become hollow if they’re not pursued simultaneously with goals of improving quality of life, relieving suffering, and providing physical and emotional comfort. (6)

The palliative care movement addresses this concern. Palliative care, which focuses on supporting the needs of the chronically ill as they approach the final phase of life, is as much a life philosophy and value position as it is a caring revolution. Two leaders of the movement recently noted “The aim of palliative care is to relieve suffering and improve the quality of life for patients with advanced illnesses and their families.” (5)

The process of getting there is as important as the goal itself. Palliative care calls for an extraordinarily inclusive team effort with a strong emphasis on planning.
This philosophy of care begins with physicians eliciting the concerns of the patient and loved ones. What is important in the patient’s life? What more would he or she like to achieve? Is there something he or she fears worse than death? (7)

Concerns expressed during this conversation help define the patient’s value system. Studies have found that patients almost always express the desire for more effective communication with a care team that is comfortable dealing with uncertainty and complexity. It’s important for the care team to tailor care to the patient’s individual needs. (8)

Palliative care is remarkably focused and pragmatic. If I place myself in an elder patient’s shoes – multiple diseases, some compromise in capacity, but an uncertain prognosis – priorities become more obvious. What would I need? What would I ask of my caregivers? First, relieve my suffering. Second, improve the quality of my life. Third, manage my pain and other symptoms effectively over a long span. Fourth, while you are caring for me physically, don’t abandon me psychologically or spiritually. Help me grieve my losses. Fifth, be sure to coordinate this as a team effort, remembering that my family and I are part of the team.

At the end of the day, the patient seeks enough comfort to contribute to loved ones’ lives, enough resources to not be a burden to family and friends, and enough strength and capacity to control one’s own life. (9)

Many people are dealing with these issues with their loved ones now, but it makes good sense to plan ahead for a time when this generation will have multiple medical conditions themselves but will not yet be in the dying process. For more information on palliative care, three good sources are the Center to Advance Palliative Care, Brown University’s Center for Gerontology and Health Care Research, and the National Consensus Project for Quality Palliative Care.
Where do hospice services fit in with palliative care? Hospice care has a remarkable track record in supportive, holistic, end-of-life care. In the United States, however, it has been primarily associated with terminal care of cancer patients. Insurance coverage for hospice services requires physician certification that a patient has only six months to live. Such certification in non-cancer chronic diseases is difficult. (10)

But slowly, around the world, care systems are beginning to absorb the teachings of hospice in the form of chronic-disease management, team coordination, and a holistic, patient-centered care approach. When successful outcomes are well defined, everyone benefits. For example, patients should be able to voice their personal needs and define their long-term and short-term goals. Evaluation should be thorough on the front end and take into account what patients define as an excellent outcome. Care should be well planned, based on these expectations, and discussions should be summarized in a treatment directive, leaving little to chance. And a trusted health care proxy should be identified, in case the patient becomes incapable of making his or her own health decisions. With this road map, care execution and coordination manage the complexity of the situation, helping to simplify a patient’s remaining time. (5)

When palliative care plans are successful, what do we find? More joy and pleasure; less pain and worry. We also find less hospitalization, fewer nursing home placements, greater patient and family satisfaction, greater caregiver health and well being, and, in the end, a greater likelihood of a peaceful death, surrounded by loved ones, at home. (5)

In a recent JAMA article researchers stated that patients supported by these physician discussions “were more likely to accept their illness was terminal, prefer medical treatment focused on relieving pain and discomfort over life-extending therapies, and have completed a do-not-resissitate order.” (11) Doesn’t sound like something that a Medical Society should be on record as opposing.

For Health Commentary, I’m Mike Magee.

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