End-of-Life Choice, Palliative Care and Counseling


New law takes effect statewide for terminally ill

By Julie Sherwood, staff writer
Messenger Post
Posted Feb 09, 2011

Finger Lakes, N.Y.-A new law in effect beginning today requires doctors and nurse practitioners to offer terminally-ill patients information and counseling concerning palliative care and end-of-life options.

“Typically, patients are only referred to hospice two or three weeks before their death,” stated
Dr. Patricia Bomba, vice president and medical director of geriatrics for Excellus BlueCross
BlueShield. “This new law requires physicians and nurse practitioners to discuss palliative care,
hospice and all their other options earlier in the course of the patient’s illness.”

The New York State’s Palliative Care Information Act encourages discussions between patient
and physician about the goals for care and also the need for a Medical Orders for Life-Sustaining
Treatment (MOLST) form, as well as ensures optimal relief of pain and other symptoms and a
timely referral to hospice.

More information, at CompassionAndSupport.org

Atul Gawande: How to Talk End-of-Life Care with a Dying Patient

Compassion & Choices has long been a leader in the effort to empower patients to make their own end-of-life decisions.  Five states now have expanded end-of-life choice, including New York and California.

In July, Dr. Atul Gawande published a much talked about article on aggressive medical interventions for dying patients–and how patients and doctors must work together to decide priorities for how and when to treat illnesses for those facing the end of life.

In October, Dr. Gawande discussed the four important points for doctors to discuss with terminally ill patients about their end-of-life care. Instead of pressing patients to make hard decisions, Gawande emphasizes the importance of asking questions about their hopes and fears.

Hobsons Choice

Today family, friends and neighbors who loved Joan and Thomas Vanacore are grieving their tragic deaths and wondering how it might have been different. The Vanacores, known by the community of North Haven, Connecticut as decent and loving people, died violently — because our society is dysfunctional around death. Our laws are cruel. Connecticut law denied them the peaceful, humane choices they deserved as their exemplary lives drew to a close. Compassion & Choices is working hard to change that and the sadness of this case only increases our determination to succeed.

Both the Vanacores had terminal illnesses. Thomas, 73, had advanced cancer and Joan, 70, was dying of Alzheimers. We can’t know for certain what Thomas was thinking when he shot his beloved wife of 38 years in the head and turned the gun on himself in the sunroom of their home. But as their story unfolds, it repeats a pattern and illuminates truths all too familiar to those who fight for dignity and choices at the end of life.

Here is that truth in a nutshell: Many people with terminal illness want desperately to meet death on their own terms. Facing imminent disintegration of body and mind, they wish their passing to reflect the values and beliefs of a lifetime and avoid prolonged, needless suffering. The laws of most states prevent them from planning a peaceful, intended death, so they resort to violent means. Some jump from balconies and some drive into highway abutments. But most turn to America’s icon — the gun.

Shame, shame on a society that forces such a Hobson’s choice. These are our elders, the generation that fought the war for democracy and freedom and they deserve better. Their actions reflect values that form the very backbone of America. Among these are a deep sense of responsibility for themselves and others, courage to face the hard facts of a tough situation, and the practical ability to take charge of their fate. Many also act from extreme altruism and desire to spare their families the burden of a long and difficult demise. Courage, altruism, responsibility — those who would condemn the Vanacores don’t appreciate the force of these bedrock American values.

The Vanacores join a line of decent, distinguished couples whose character led them to similar actions at the end of their lives. World War II Admiral Chester Nimitz, Jr. and his wife planned their death together and left loving notes for their family. In 1975 world famous theological scholar Henry van Dusen and his wife faced declining health and took overdoses of sleeping pills to end their lives. A letter for their three sons and said they had led happy lives, and were not afraid to die. Van Dusen’s successor as President of Union Theological Seminary commented that “He had a very strong belief in immortality. His attitude was that, when your time is up, when you have lived out the possibilities, it is all right to stop, and to go on to the next life.”

Why doesn’t society allow people who share Van Dusen’s conviction to pursue it openly and die in peace with medication prescribed by their doctor? Forcing people to plan in secret and act alone prevents a careful medical evaluation and the opportunity for palliation and probably shortens their lives even further. As Nobel laureate Percy Williams Bridgman, dying of cancer, wrote about his own self-inflicted gunshot, “It isn’t decent for society to make a man do this thing himself. Probably this is the last day I will be able to do it myself.”

When I think of the character of such people I always recall the story told by a woman from the little town of Sedro Woolley in Washington State. She described her husband as a person who “took care” of whatever needed doing. He took care of their rural home, and he took care of her. Dying of cancer and suffering excruciating pain, he still looked out for her needs. The day he died he spent the morning sharpening all her kitchen knives. Then he embraced her tenderly, went out to the yard and shot himself there, so it wouldn’t make a mess in the house.

The people who take pride in “taking care” deserve better from us. They deserve real choices and permission to die in peace and comfort, with the same honor and decency with which they lived their lives.

Aid in dying, the opportunity for the terminally ill and mentally competent to have the choice of life-ending medication prescribed by their doctors, is legal only in Oregon, Washington and Montana. Connecticut should turn the tragedy of the Vanacore case into hope and comfort for those who follow. The case in litigation, Blick v. Connecticut, takes the first step toward that hope.

It’s National Healthcare Decisions Day – do you know if your decisions will be honored?

Compassion & Choices, the nation’s largest and oldest nonprofit organization working to improve care and expand choice at the end of life, today marked National Healthcare Decisions Day, releasing new language every American may consider to strengthen their advance directive. The new addendum, My Directive Regarding Healthcare Institutions Refusing to Honor my Healthcare Choices, is designed to protect patients in the event that they are an inpatient in an institution that will not honor their advance directive due to religious, moral or ethics policies. Individuals might find themselves in such an institution due to an unplanned emergency or because circumstances provide them no other choice.

The addendum addresses potential problems arising from the United States Council of Catholic Bishops’ instructions to Catholic providers to disregard healthcare choices that conflict with Catholic moral teaching. Most recently, the Bishops instructed 624 Roman Catholic-affiliated hospitals, 499 nursing homes and 48 Catholic Health Maintenance Organizations that artificial feeding of permanently unconscious patients is almost always morally obligatory, regardless of advance directive instructions or family wishes.
Adding the language in this addendum:

  • clarifies admission to a religiously-affiliated facility does not imply consent to particular care mandated by the institution’s religious policies, and
  • directs a transfer if the facility declines to follow the wishes outlined in an advance directive.

This addendum is available now on the end-of-life planning page of Compassion & Choices’ website: http://www.compassionandchoices.org/g2g

The right to make health care decisions is hollow unless those decisions actually determine the care received. National Healthcare Decisions Day is intended “to encourage patients to express their wishes regarding healthcare, and providers and facilities to respect those wishes, whatever they may be.” It is troubling to think that over 20% of America’s health care providers operate under ethical and religious policies that may prevent them from honoring the wishes expressed in advance directives. I suggest that people making an advance directive consider including this addendum, because you just cannot know whether a religiously-affiliated institution will carry out specific end-of-life choices.

The addendum, developed in consultation with experts in hospice and palliative care and elderlaw attorneys, is as follows:

My Directive Regarding Healthcare Institutions Refusing to Honor my Healthcare Choices

I understand that circumstances beyond my control may cause me to be admitted to a healthcare institution whose policy is to decline to follow Advance Directive instructions that conflict with certain religious or moral teaching.

If I am an inpatient in such a religious-affiliated healthcare institution when this Advance Directive comes into effect, I direct that my consent to admission shall not constitute implied consent to procedures or courses of treatment mandated by ethical, religious or other policies of the institution, if those procedures or courses of treatment conflict with this Advance Directive.

Furthermore, I direct that if the healthcare institution in which I am a patient declines to follow my wishes as set out in this Advance Directive, I am to be transferred in a timely manner to a hospital, nursing home, or other institution which will agree to honor the instructions set forth in this Advance Directive.

I hereby incorporate this provision into my durable power of attorney for health care, living will, and any other previously executed advance directive for health care decisions.

On National Healthcare Decisions Day I encourage Americans – of all ages – to talk with their doctor and loved ones and document their wishes in an advance directive. People may also want to strengthen their advance directive by addressing the unknown question of whether a religiously-affiliated institution will honor those wishes.

For more information about end-of-life planning, visit Compassion & Choices Good to Go resource page: http://www.compassionandchoices.org/g2g.

Rep. Blumenauer to Keith Olbermann: I should have called them life panels.

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