Dr. Byock's Potent Quotes

On the Crisis in End of Life Care

America is in a state of crisis regarding the manner in which we care for people who are dying. Study after study documents that medical care for the dying is poorly planned and frequently ignores the treatment preferences of the patient and family. Pain is a commonly under-treated -- or not even addressed -- even within our most prestigious teaching institutions. Too often, and with no mal-intent on the part of the doctors or nurses, medical treatment directed at prolonging the patient's life ends up contributing to their pain, isolation, and suffering.

As if all that were not bad enough, the current "non-system" of American health care routinely pauperizes people for being seriously ill and not dying quickly enough! Added to the worries of illness, patients worry that in continuing to live they will consume their life's savings and then bankrupt their family; and sometimes they are right. Too many American families are shaken with financial devastation heaped on top of the emotional grief of losing a member.

Suffering among the dying in America is pervasive, and so much of it is unnecessary.

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On Pain

Pain and other symptoms of discomfort associated with terminal illness can always be alleviated. The notion that some physical pain associated with dying can not be made more tolerable is simply untrue.

Most pain associated with cancer or other incurable illness yields to straightforward treatment. At times, pain or other distressing symptoms prove difficult to treat and absolute comfort can not be achieved, but it is always possible to make symptoms more tolerable.

The concept of uncontrollable pain is self-fulfilling. Pain only becomes unmanageable when the clinicians involved give up. Although I realize that the world in which we live is real, and therefore imperfect, as a physician I consciously adopt the attitude that there is no such thing as uncontrollable pain, only pain that has yet to be controlled.

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On Physician-Assisted Suicide

Approaching the problem of suffering among the dying through the lens of assisted-suicide is like looking through the wrong end of binoculars; it narrows and distorts the view. My focus is in reducing the conditions that make PAS seem an attractive alternative to patients facing the prospect of living with an incurable illness and to society struggling to care for the dying. Success will not come with making assisted suicide and euthanasia legal, but rather with making them unnecessary.

As a doctor my commitment is to do everything possible -- and anything that is necessary -- to alleviate a person's suffering. In the very rare situations in which physical distress is extreme it is always possible to provide comfort through sedation.

The difference between what I do and euthanasia is that palliative care does whatever is necessary to alleviate the suffering while euthanasia is focused on eliminating the sufferer.

Those among us who think we would want physician-assisted suicide if we were sick, should ask ourselves whether that is also what we would want for our lover or sister or child who was incurably ill. Would we want them to die quickly, so that they would not become a burden to us? If not, we need to look deeply into what "success" would look like in this time of living we call dying.

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On Medicine's Approach to Care for the Dying

The medical profession most commonly approaches dying as if it were solely a problematic medical event. From the first day in medical school, doctors are taught to approach patients by defining a set of medical problems to be solved. People come to doctors with "problems". For each case a problem list must be developed through which both physical and psycho-social problems can be addressed.

End-of-life care is unlike elective surgery, fracture management, treatment of the flu, surgery for acute appendicitis, or even something a serious as a heart attack from which one can be expected to survive. One of the key features that distinguishes end-of-life care from other aspects of medicine is that, for the terminally ill patient, life can not simply be put on hold while treatment is endured.

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On the Nature of Dying

Dying is more than a set of problems to be solved. The nature of dying is not medical, it is experiential. Dying is fundamentally a personal experience, not a set of medical problems to be solved.

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On the Family's Role in Care for the Dying

The word "family" is more a verb than a noun. While having the substance of a verb, family derives its meaning from processes involving qualities of belonging, mutuality and responsibility.

Family is not defined by genetics, but by relationships of love and mutuality. Inevitably the dying process impacts each member of a person's family. Family's deserve our care in the process of losing a loved one and during bereavement. Yet, families often benefit deeply from providing care. Those who are willing and able deserve skilled support enabling them to love and honor the person departing in a physical and emotional way.

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On the Community's Role in Care for the Dying

Like family, community is really defined by a collective sense of belonging, mutuality and shared responsibility. Community doesn't exist, it happens. We each have direct responsibilities, one to another, as life wanes and death approaches. They are not onerous and they are not primarily medical.

Just as dying is part of the life of an individual, and part of the life and history of a family, caring for those among us who are dying is part of the ongoing life of the community.

Care for people as they die obviously requires medical expertise, but care for our loved ones, friends and neighbors is, frankly, too important to leave to the experts. It is time for all of us, as families and as communities, to take back responsibility for our loved ones and our neighbors as they die. We must ensure that competent medical evaluation is available, that appropriate treatments are offered and that comfort is ensured. But we can also ensure that people are visited, that their stories are heard and that they may know they are valued. We can bear witness to their lives, their frustrations, defeats and triumphs, and bear witness to their passing.

We should consciously raise our expectations for care. Comfort should be a given, beyond symptom management we should ensure that our patients, loved ones and neighbors are honored, and even celebrated, in their passing.

A utopian notion I have is of people being born into the welcoming arms of community and dying from the reluctant arms of community. While I live and practice in the real world, my hospice experience over the years makes me believe that through professional commitment and skilled volunteerism we can realize that dream.

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On Surprising Opportunities at the End of Life

Dying is never fun and it is rarely easy. Most people experience a time of discomfort and personal struggle in the process of dying. But the arduous nature of the experience should not obscure its potential value. Many, many people have told me that the last part of their life has been among the most wonderful times of their life. This phenomenon of human experience is largely ignored in public discussions despite its relative frequency.

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On Dying Well

I have stopped talking in terms of a "good death" for I believe that the phrase is misleading. For one thing it sounds "prescriptive" as if one could specify conditions to be met that would ensure such an event. Additionally, I have never met anyone I was convinced knew anything about death -- I certainly don't. I do know something about the process and experience of dying, simply because I have asked my patients about their experience, listened carefully, and observed as carefully as possible.

Dying Well can be thought of as a subjective personal experience which embodies a sense of meaning and purpose and a sense of completion, at times even fulfillment.

I have seen people change in remarkable ways even as they die. They do not become someone else, but somehow more themselves, often more accepting and forgiving of themselves, and more loving toward themselves and with others.

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On Human Growth and Development

The conceptual model and language I work with academically is one of lifelong human growth and development. Maslow, Erickson, and Piaget each told us that human development was a lifelong process. I think it simply turns out that they were right.

Personal growth is rarely easy and a growthful dying may actually be effortful, sweaty, gritty yet have profound value for the person dying and their family.

A person's dying may not be easy, but what of value in life is? Similarly, caring for our loved ones as they die is simply part of full and healthy living. It is rarely "fun", indeed is often hard - but it is as important and valuable as any experience in life.

Despite the relative frequency of this real, human experience, it is largely ignored in public or health policy discussions.

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