How and Where Do We Prefer to Die?

National Health Care Decision Day, Saturday, April 16, asks that we talk with our families about how we want to be treated, if we become seriously ill and face the end of our lives.

No, this is not a new version of Sarah Palin’s ‘Death Panels!’ No, this is not a morbid preoccupation with a subject few want to discuss. Rather it an effort to enable us to retain control over our lives when life ebbs. From such discussions those who may have to care for us someday will not have to guess our response to difficult questions: about having machines keep us alive, even when the quality of life is gone; about dying in a hospital or at home; about our hopes for a dignified, pain-free peaceful death.

The recently issued Expert Panel on End of Life Report (Boston Globe Editorial, March 23, 2011) is a major contribution to helping our Commonwealth, and each us, to address these questions in a thoughtful and positive manner. If followed, the Panel’s recommendations provide the necessary building blocks for a cultural transformation in providing end-of-life care.

We are a group of ordinary citizens who meet regularly as an independent Community Ethics Committee to consider the ethical dimensions of bio-medical issues presented to us by a Consortium of Harvard-affiliated hospital Ethics Committees.

We are encouraged that the Report transcends what has become a destructive, and highly polarized political conversation about end-of-life care. Consideration of the economics of health care is pointedly resisted; the focus is exclusively on best care for the individual.

We welcome the Experts Report as consistent with values surrounding end-of-life medical care we vigorously affirm: the preciousness of every life, human dignity, the principle of individual autonomy and our right to make informed choices about the care we receive, reflecting our particular cultural, religious and personal values.

Autonomy in decision-making, the report asserts, requires full knowledge of the options which are available to a patient. Health care - givers are expected to fully inform patients and families of various treatment plans ranging from continued curative treatment to comfort care, free from pain and distress. Knowledge equals empowerment - what we, the public, want and deserve.

Many will say that they wish “to die at home” The Report underscores that more than physical location is hoped for: “...what people want and need as the end of life approaches are things that mattered most to them throughout life...that their wishes and values be respected; that their symptoms be well controlled; that their dignity is maintained; and that they can spend as much meaningful time as possible with those they most love.” (Expert Report p. 2)

Palliative care and hospice care at the end of life are welcome aids in achieving these goals. Palliative Care never means “giving up” on a gravely ill person. The opposite is the case as treatment turns from aggressive and often painful and/or ineffective medical procedures that may eke out a few more days of life, to compassionate care marked by alleviating pain and by providing psycho-social and spiritual support for the dying patiently and the family.

Similarly, Hospice Care is not meant just for the final few days of life when doctors say they have nothing more to offer a terminally ill patient. Hospice -- at home or in a hospice residence -- provides the practical support system where the quality of a person’s final weeks or months of life is assured. Hospice patients often live longer than those who continue to receive aggressive, life-extending treatment. There is also evidence that the grieving process for the family is eased with on-going hospice support.

Boldly, the Report urges funding for all Massachusetts residents for hospice enrollment via Mass Health.

There are many misconceptions about about end-of-life doctor-patient conversations, and about hospice and palliative care. Accurate information provided in the Report will aid in changing our focus from preoccupation with how we die to an emphasis on the quality of our lives until we die.

At every turn, the CEC champions the need to create a better balance between patient/ family on one side and the medical profession on the other, particularly at the end-of-life. This effort by respected health-care professionals is a giant step towards this goal.

Rabbi Herman J. Blumberg,
Member, The Community Ethics Committee, Division of Medical Ethics, Harvard Medical School.