Getting End-of-Life Care Right in MA

When people are willing to consider their own mortality, they tend to want to die at home. This is not, however, what often occurs. We don’t talk about dying, and we die more often than we’d like, or than is necessary, on a hospital critical care ward.

To its credit, Massachusetts is addressing this disparity. And it will involve a more central role for the palliative care specialty. This is a very good thing.

The Massachusetts Department of Public Health is in the process of creating what it terms Regulations Regarding the Information and Counseling about Palliative Care and End-of-Life Treatment Options.

What the DPH is hearing is that the chances improve to give people the “good deaths” they wish for when the palliative care specialty plays a more central role, and the medical system knows their wishes.

The DPH sought out testimony in reaction to a draft of these regulations, and last Thursday heard from the chair of the state’s Expert Panel on End of Life Care, the executive directors of the Conversation Project and MOLST program, among several others.

By coincidence, on the day of this testimony, a Pew survey found that “at a time of national debate over health care costs and insurance ... most Americans say there are some circumstances in which doctors and nurses should allow a patient to die. At the same time, however, a growing minority says that medical professionals should do everything possible to save a patient’s life in all circumstances.”

“In all circumstances” would seem to mean regardless what the patient wants or what the doctors think best. So for about 30 percent of America, according to Pew, allowing natural death to occur is always wrong, is never in a patient’s best interests, and what the patient or doctor say can be disregarded.

Among other things, that poll is indication of the complexity of dealing directly with end-of-life care, so DPH deserves some credit for following up on the recommendations of the Expert Panel. 

Among those testifying was Carol Powers, president of the nonprofit Community Voices in Medical Ethics and co-founder of the Community Ethics Committee (sponsors of this blog). Since 2007, decision making in end-of-life medical care has been central to much of the committee’s work.

Palliative care is widely misunderstood, and its benefits both for the comfort and even the longevity of patients often are delayed.

“A very real impression among many in the community is that a transition to palliative care, and more particularly entry into the hospice care system, means no further medical treatment options will be provided, imposing a ‘death sentence,’” Powers said. (See Powers’ full testimony here.)

Palliative care needs to be clearly and carefully defined in the regulations, Powers said.

Given varying sensibilities about mortality, it is hard to the right time to broach the subject. And yet, Powers said, “A patient’s prognosis, whether it be a six-month terminal illness or a lifetime of medical interventions to address a chronic condition, should not limit the appropriateness of initiating this discussion or providing this information.”

Any pamphlets or other educational information “must be sensitive to cultural and religious perspectives; it must be in a form that assumes face-to-face conversations with a member of the patient’s health care team; and it must be provided in the context of continued and compassionate care,” Powers said.

More generally, the Community Ethics Committee is encouraged by the DPH effort.

“We believe hospitals, clinics, and long-term care facilities should have an obligation to provide information on palliative care and end-of-life treatment options,” Powers said, “and we applaud (DHP) efforts to ensure that happens.”