End-of-Life Choice, Palliative Care and Counseling

Posts TaggedBarbara Coombs Lee

Assisted Dying: Experts Debate Doctor’s Role

By Katie Moisse
ABC News
July 13, 2012

Peggy Sutherland was ready to die. The morphine oozing from a pump in her spine was no match for the pain of lung cancer, which had evaded treatment and invaded her ribs.

“She needed so much morphine it would have rendered her basically unconscious,” said Sutherland’s daughter, Julie McMurchie, who lives in Portland, Ore. “She was just kind of done.”

Sutherland, 68, decided to use Oregon’s “Death With Dignity Act,” which allows terminally-ill residents to end their lives after a 15-day requisite waiting period by self-administering a lethal prescription drug.

“Her doctor wrote the prescription and met my husband and me at the pharmacy on the 15th day,” said McMurchie, recalling how her mother “didn’t want to wait,” she said. “Then he came back to the house, and he stayed with us until her heart stopped beating.”

But not all doctors are on board with the law. In the 15 years since Oregon legalized physician-assisted dying, only Washington and Montana have followed suit, a resistance some experts blame on the medical community.

“I think it has to do with the role of physicians in the process,” said Dr. Lisa Lehmann, director of the Center for Bioethics at Brigham and Women’s Hospital in Boston and assistant professor of medicine at Harvard Medical School. “Prescribing a lethal medication with the explicit intent of ending life is really at odds with the role of a physician as a healer.”

More than two-thirds of American doctors object to physician-assisted suicide, according to a 2008 study published in the American Journal of Hospice and Palliative Care. And in an editorial published Wednesday in the New England Journal of Medicine, Lehmann argues that removing doctors from assisted dying could make it more available to patients.

“I believe patients should have control over the timing of death if they desire. And I suggest rethinking the role of physicians in the process so we can respect patient choices without doing something at odds with the integrity of physicians,” she said.

Instead of prescribing the life-ending medication, physicians should only be responsible for diagnosing patients as terminally ill, Lehmann said. Terminally ill patients should then be able to pick up the medication from a state-approved center, similar to medical marijuana dispensaries.

But assisted dying advocates say doctors should be involved in the dying.

“Patients deserve to have their physician accompany them there and not walk away,” said Barbara Coombs Lee, president of the Denver nonprofit Compassion and Choices.

Coombs Lee, a nurse-turned-lawyer and chief petitioner for the Oregon Death with Dignity Act, said decisions about death should be no different than other treatment decisions.

“Physicians don’t walk away from patients who make other intentional decisions to advance death, such as refusing a ventilator or a pacemaker,” she said. “Why walk away from a terminally ill patient requesting life-ending medication?”

McMurchie agrees.

“Anything that improves access to assisted dying is a step forward,” she said. “But I think shepherding patients through their final days is a huge part of a physician’s responsibility.”

Death Phobia Prevails

Hospice and Palliative Care are “Not About Dying”

Last week’s “Heights of Compassion; Bridges to Choice” Conference in Chicago was a stunning success. Participants relished the opportunities to gather information and gain tools for personal empowerment and community activism. Several speakers spoke to our society’s reluctance to acknowledge death, and made the same point in different ways.

Teacher and author Stephen Jenkinson called our society “death phobic and grief illiterate,” with healthcare professionals among our most vigorous enablers. He accused palliative care and hospice professionals of predictably “catering” to death phobia whenever it shows up. I spoke of the marketing to seniors: what I called a “sex on the golf course” message.

As if on cue, articles appeared immediately following the conference to prove our point. On July 3rd the Associated Press reported on hospices disavowing their role in dealing with end-of-life experiences and losses.

Robin Stawasz, family services director at Southern Tier Hospice and Palliative Care in upstate New York told the reporter hospice isn’t about tending to the dying at all. No, “we come in and help people go golfing or go snowbird down to Florida, or go out to dinner several nights a week. We help them get to the casinos on weekends,” she said. “This is not getting ready to die. This is living — living now, living tomorrow, making the best possible life with what you have.”  An AARP blog reported gleefully that this is “just the beginning,” as hospices “diversify their services” in preparation for the eventual needs of aging boomers

One of our conference plenary sessions featured a dialogue between Rebecca Kirch from the American Cancer Society and the Center to Advance Palliative Care (CAPC), and Compassion & Choices board member David Muller. David chairs the Medical Education department at Mount Sinai School of Medicine and attends at the Hertzberg Palliative Care Institute. The topic was reframing the national conversation from “death and dying” to “quality of life.”

Rebecca’s organization wants more patients to access palliative care. They commissioned public opinion research to give the palliative care community a roadmap to communicate more effectively with consumers and policymakers on the benefits and future direction of their field. Unsurprisingly they found people shy away from being reminded of their mortality. Apparently the CAPC decided the best plan is to disavow any real association with, or focus on, the end of life. Her presentation described advantages of the new, upbeat goal of lifting the “quality of life” throughout an illness, from diagnosis to … well, to something “not death.”

David followed Rebecca’s talk with an astute analogy. He described a practice among some established physicians of rebuking insurance coverage and treating only patients who pay with cash. This alarming behavior, he said, was a growing trend in New York. These physicians built their practices on healthcare insurance payments, only to cast insurance contracts aside once they assembled sufficient loyal and wealthy patients. They owe their careers and livelihood to insurance, but outgrew their dependence on it.

David’s point is that palliative care as a medical specialty grew from hospice, which arose to meet the needs of patients facing the end of life. Hospice promised not to abandon these patients or torture them with fruitless treatments. They declared dying patients deserve care aimed at comfort, not cure. But now, as some doctors turn their backs on insurance, some hospices and palliative care leaders turn their backs on death and dying. They can’t be bothered with the arduous task of helping America overcoming its death phobia and grief illiteracy. How much easier to take the quick gratification and join the phobic chorus.

Twenty years ago there was no such thing as medical accreditation in palliative care. Death and dying brought palliative care to the dance of medical specialties. Now that palliative care doctors have learned the steps, they believe they deserve a more attractive dance partner. First palliative care left death standing against the wall.  Now hospice looks to do the same. Who will ask death to dance?

We at Compassion & Choices will, of course.  Because we have learned over and over that only death — only an acute awareness of our mortality — can teach us the joyful, authentic, intensely human dance of life.

Dear Abby Opens Day One Of The First National Conference

National Syndicated advice columnist Dear Abby kicked off the Compassion & Choices first national conference today with an amazing opening plenary session, The Common Sense Approach to End-Of-Life Choice.

Abby’s emotional and heartfelt presentation touched on her own experiences with dying family members and the importance of advance directives, “My brother had an advance directive, had an advocate, and was able to die a peaceful death,” she said.

She also spoke about the need for each person to make their own decision, according to their own values. “There’s a big difference in thinking you know what’s right for everyone else,” she said, “and passing laws that tell other people how they can die.”  Abby went on to express her belief in the need for choice at the end of life.

Following Abby’s presentation, the first breakout sessions got underway. The Good To Go panel featured Compassion & Choices end of life counseling staff discussing legal options for a peaceful death in every state.  A superb panel of some of the nation’s most knowledgeable lobbying experts informed attendees about the best ways to engage elected officials.  C&C President Barbara Coombs Lee and C&C Government Affairs Director Theresa Connor spoke as well on how we gauge success in the end-of-life movement.

From panels on legislation to demystifying hospice to fiding the best way to talk about end-of-life choice, today’s conference events were an incredible educational experience. And we’re just getting started.

Catholic Healthcare West Becomes Dignity Health

Expansion in Oregon Tests whether it’s a Distinction without a Difference

As I previously blogged, the Catholic hospital brand is no longer desirable in the marketplace for mergers and acquisitions of healthcare entities.

This realization led Catholic Healthcare West, the nation’s fifth largest healthcare conglomerate, to give up its status as a ministry of the Catholic Church. In doing so the corporation exempted itself from obedience to the Ethical and Religious Directives for Catholic Healthcare (ERDs) and released its secular hospitals from control by their local bishops. Local bishops and the ERDs still define permitted services in its 25 Catholic hospitals.

The corporation changed its name to Dignity Health, revamped its board of directors and replaced the ERDs with a “Statement of Common Values” to set the ethical framework and define permissible care. Though not entirely secular (the Values Statement still refers to employees as “the hands and heart of the ministry), Dignity is clearly not Catholic when it comes to reproductive health. The Common Values statement precludes abortion and in vitro fertilization, but is silent on tubal ligation and vasectomy.

When it comes to services at the end of life, Dignity does little to release patients from the chains of Catholic doctrine. The Statement pays lip service to patients’ rights to make medical decisions, execute advance directives and name surrogate-decision makers. Then it goes on to address the crux of the matter — withholding or withdrawing life-sustaining treatment, and allowing the legal choice of aid in dying.

At first glance Dignity Health’s policy on life-sustaining treatment may seem balanced and patient-centered:

There is no obligation to begin or continue treatment, even life-sustaining treatment, if from the patient’s perspective it is an excessive burden or offers no reasonable hope of benefit. Death is a sacred part of life’s journey; we will intentionally neither hasten nor delay it.

Let’s put aside the obvious absurdity that a whole hospital system would vow not to intentionally delay death! That’s their primary job, no? And I trust if I arrived at a Dignity Health facility, injured and bleeding, they would do everything in their power to delay my death!

It appears that in their haste to disavow any participation in an intended death, drafters of Common Values inadvertently applied the mantra of the Catholic hospice industry to an entire healthcare system, including emergency rooms and surgery suites. Perhaps they can fix that in the next edition.

Retaining Catholic Doctrine Around Intention

I have written at length about the Catholic Doctrine of Double Effect and the disservice it pays dying patients. It allows death to come only as an untended consequence of treatment to relieve pain and other symptoms and never as the intended purpose of an act or omission. Any act or omission intended to cause death is labeled “euthanasia” in the ERDs and strictly forbidden.

The ban on purposeful dying gags patients who might otherwise express a yearning to complete a prolonged dying process. It tempts doctors to hold back on opiates as pain and breathlessness escalate during active dying, because they fear being accused of intending the impending death and practicing euthanasia.

A host of alternatives for peaceful dying are considered ethical and legal in every state. They include discontinuation of treatments like renal dialysis, ventilation and feeding tubes, deactivation of implanted pacemakers and defibrillators, and provision of treatments like palliative sedation and drugs to prevent air hunger and ease the dying process during ventilator discontinuation.

Under Dignity Health’s restrictions regarding “intention” patients and their doctors are allowed these legal alternatives only if they disavow any purpose to abbreviate the period of suffering and advance the time of death. Patients must ask in code to be “relieved of the burden of cardiac pacing” instead of asking to stop the pacemaker so the heart will slow, because the patient wishes to die.

Test Case in Ashland, Oregon

Dignity Health’s expansion plans target Oregon and its first acquisition is the community hospital in the city of Ashland. Officials at Dignity and Ashland Community Hospital (ACH) are working out details of the acquisition, but the Ashland City Council must approve the deal, because it involves leasing public lands.

ACH CEO Mark Marchetti has said since ACH never provided aid in dying on its premises, its function in relation to the state’s Death with Dignity Act will not change. We’re not so sure, and believe the City Council and Ashland residents deserve some assurances.

It matters little whether hospitals allow patients to take life-ending medication on their premises, because people don’t choose to die in a hospital anyway. Wanting to die at home is one of the big motivators for people gaining eligibility for aid in dying in Oregon. But access does depend on a host of patient-provider interactions that precede a patient exercising their rights under the law. Catholic entities in Oregon forbid these interactions, and it’s important to ensure ACH will not start doing the same.

We have asked ACH officials to assure Ashland residents in writing that the institution resulting from negotiations between ACH and Dignity Health will:

  1. Retain a neutral stance toward aid in dying and will not penalize, discharge or reduce services for patients who gain eligibility for aid in dying;
  2. Do nothing to prevent, deter or punish employees who provide patients with information about accessing aid in dying under the Oregon Death with Dignity Act.
  3. Permit its staff and contracted physicians to answer patients’ questions about aid in dying and refer requesting patients to knowledgeable and supportive resources to pursue their request;
  4. Allow employed, contract physicians and physicians with hospital privileges to discuss aid in dying upon a patient’s request and fulfill duties such as medical history review, consultation and reporting required by the Death with Dignity Act on its hospital premises and medical offices.

This week, ACH responded positively — in writing — to our request for assurances. The Ashland City Council should put the ACH response on record and make their approval contingent on those promises. Only then can the residents of Ashland have confidence that Dignity Health’s involvement in their community will not deprive them of rights and privileges they have held for fifteen years.

OFFBEAT: Legendary advice columnist ‘Dear Abby’ speaking at Chicago conference

By Philip Potempa
June 25, 2012

Billed as “the most widely syndicated newspaper columnist in the world,” the Dear Abby daily advice column feature appears in 1,400 newspapers worldwide, boasting a daily readership of more than 110 million people.

She also anchors the advice page in a number of our sister newspapers as part our parent Lee Enterprises media chain, from the St. Louis Post-Dispatch to The Citizen in Auburn, N.Y.

Written under the Abigail Van Buren pen name by Jeanne Phillips, the advice column was founded in 1956 by her mother, Pauline “Popo” Phillips, who will celebrate her 94th birthday on July 4. (Popo’s twin sister Eppie Lederer aka the late great Ann Landers of Chicago fame, died of cancer at age 83 in 2002.)

Since Jeanne and the Dear Abby column are based in Los Angeles, it’s not often that we get her for a Chicago visit.

But this week, she’s the keynote speaker for a great conference event open to the public.

Compassion & Choices is the leading group working hard building bridges to improve care and expand choice at the end of life through support, education and advocacy.

The 2012 conference is in Chicago starting Thursday and continuing through Saturday. Held at the Hyatt Regency O’Hare, 9300 Bryn Mawr Ave. in Rosemont, Ill., the conference theme is “Heights of Compassion, Bridges to Choice” and offers a remarkable opportunity to connect with other end-of-life choice supporters, caregivers and activists.

Jeanne and her Dear Abby wit and wisdom opens the conference at 3 p.m. Thursday with her talk “The Common Sense Approach to End-Of-Life Choices” discussing the question: “Will they know what I want if I can’t speak for myself?”

The conference includes a wide choice of speakers, workshops and seminars during the three days, for participants to learn about advance directives, legal end-of-life options, palliative care and aid in dying. Social workers and others can receive training credit by attending.

Compassion & Choices President Barbara Coombs Lee said her organization is the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life.

She said this event is the largest gathering in the nation to connect end-of-life choice supporters, caregivers and activists, along with physicians from across the nation addressing end-of-life issues, as well as family members who will offer personal perspectives on supporting a loved one with a terminal illness. On Saturday, Coombs Lee will conclude the conference with an address on the state of the U.S. end-of-life choice movement.

Other keynote speakers for this conference include actress Megan Cole, news commentator Betty Rollin and palliative care counselor Stephen Jenkinson.

There are both daily rates available to attend to hear speakers, as well as overnight packages available and multiple day attendance options. FYI: compassionandchoices.org or (800) 247-7421.