End-of-Life Choice, Palliative Care and Counseling

Posts TaggedPatient-Centered Principles

End-of-Life Care Reassurance as ACH Considers Its Dignity Deal

Ashland Daily Tidings
September 13, 2012


Ashland Community Hospital officials insist the end-of-life care its patients receive will not change if a partnership is formed with Dignity Health.

Physicians at ACH can prescribe patients who qualify under the Oregon Death with Dignity Act medication that induces death upon ingesting, said Mark Marchetti, ACH chief executive officer. “We have no policies that dictate the issue one way or another,” Marchetti said. “We certainly don’t monitor our physicians’ prescribing.”

The hospital’s physicians can discuss the option of self-administered death with patients, he said.

Many of ACH’s physicians have made the personal and legal choice to not prescribe aid-in-dying medications, Marchetti said, “because that’s their personal philosophical position.”

Patients who are part of ACH’s Hospice Program, which cares for those diagnosed with illnesses that likely will kill them within six months, can discuss the option of self-administered death with hospice nurses and social workers as well, he said.

The Hospice Program’s nurses and social workers “refer them to their own physician and continue to provide the hospice services … and we’re even willing to be there while they take the drug,” Marchetti said. “We don’t participate.”

The Oregon Death with Dignity Act requires a patient who opts for aid in dying to administer the life-ending drug independently.

Jason Renaud, a representative from Compassion & Choices of Oregon, said he is concerned ACH’s policy will change if a partnership is formed. More

Vigilantes in Scrubs

A study published this month paints a troubling picture. Imagine palliative care doctors, working to deliver the best possible comfort care to their patients. Yet even as they meet the recognized best practices of their profession, their colleagues are judging their covert intentions and moral fiber.

Over half of the physicians who responded to the survey, published in the Journal of Palliative Medicine (JPM), reported they had been accused of “murder” or “killing” at least once in the past five years. Most often, their accusers were fellow members of the healthcare team.

Accusations came most frequently when doctors treated shortness of breath during ventilator withdrawal and when they increased doses of pain medication and sedatives to treat rapidly escalating symptoms.

Self-appointed moral police have been portraying end-of-life decisions as murder and trying to subvert them ever since the Cruzan case, in which the U.S. Supreme Court recognized the right to refuse life-sustaining treatment. That may be the first time noisy protestors harassed family members struggling over difficult, private decisions to do right by loved ones. Intrusive protests reached their pinnacle in the circus surrounding Terri Schiavo. Grandstanding lawmakers even tried to substitute their own diagnosis and judgment for those of doctors and responsible family at the bedside.

This month’s study reveals how deeply moral watchdogs are embedded in the ranks of medical professionals, and how much damage they can do. Doctors in this study faced investigation by their institutions, state medical boards, and state and local prosecutors. Accusers seem quite willing to slander and jeopardize the careers of their colleagues when they disagree with treatment decisions reached in consultation with patients and family members.

The problem is not new. An editorial in the JPM in 2005 explained the effects on those involved and the potential to distort the practice of palliative care:

A hospice medical director in a federal facility followed accepted guidelines when providing palliative sedation to a few of his terminally ill patients. This resulted in a formal investigation by the Office of the Inspector General. Over a period of 1 year, the physician faced criminal charges and the loss of his job. Although cleared from having performed either unethical or criminal acts, he was sufficiently upset by the experience that he left his position and moved to another state.

The training director of a palliative care teaching program reported, “When I first performed ‘terminal’ sedation on the ward, nurses really had a problem. Just last week, I had a resident accuse me of euthanasia, because I ordered a low-dose morphine drip. It’s part of the day-to-day way of life in hospital palliative care.”

Accused doctors in the current study reported mental distress and anger. None were ever convicted, but some suffered license suspension, monetary damages and forced relocation. Ultimately, patients will bear the most distressing consequence: increased end-of-life suffering. Who will treat pain or breathlessness aggressively again after being so accused and harassed?

We need specific legal protection for professionals who honor their patients’ end-of-life decisions and follow best-practice standards for managing end-of-life agonies. Unfortunately, current law in most states does not grant unequivocal protection to treatment that is appropriate for the situation and follows the patient’s wishes. The dominant thinking today is that legality of treatment hinges on the state of mind of the physician: Did the doctor “intend” the death of the patient?

The field of bioethics rests on four premises. These include autonomy – respect for the individual, and beneficence – actions intended to benefit the patient. Sometimes autonomy and beneficence are in tension. Palliative care doctors bear some responsibility for the current situation, as they have sought legal protection based on the beneficence principle and their own intentions, rather than a patient’s autonomy and self-determination.

When a doctor employs drugs that relieve pain, delirium and breathlessness, and also suppress respiration, they know it is possible that medication may advance the time of death. Current policies protect them only if they acknowledge death as a possible, unwanted side effect, and assert their only intention is to ease the patient’s suffering. The principle amounts to: What is going on in the doctor’s mind? Of course no one can know, and the unknowable nature encourages accusations of improper intent. “Intent” protection will never offer real security to doctors or optimal care to their patients.

The answer is legal protection for medical care consistent with the informed, documented healthcare decisions of the patient or the surrogate, and consistent with standards of practice. Physicians should be able to deliver excellent care, prevent suffering at life’s end and act according to a patient’s wishes. A patient or surrogate should understand and accept that aggressive, effective comfort care may advance the time of death. It should not be forbidden for a patient or surrogate to “intend” death when they opt for removal of ventilator support or any other life-sustaining therapy. Doctors should not feel forced to withdraw and undertreat the patient who states such an intention. Only with clear legal protection – based on patient autonomy – will good doctors be safe from self-righteous posses of second-guessers and accusers.

CBS TV Program “The Mentalist” takes on dilemma of dying patients

On Friday March 31, the CBS television series “The Mentalist” ended the episode with a scene with a terminally-ill man choosing to end his life with medication. This scene demonstrates the rational desire people have to control their circumstances at the end of life.

It also shows the dilemmas faced by people who cannot openly speak with their physician about aid in dying.

Compassion & Choices offers information and counseling for people in all 50 states who are interested in achieving a peaceful death. We also offer a wealth of materials to aid individuals in letting their physician and loved ones know their end-of-life wishes.

November is National Hospice and Palliative Care Month: Celebrating Patient-Centered Care

As part of our mission, Compassion & Choices is committed to the promotion and development of patient-centered care. Education about the incredible value of hospice and palliative care for patients and families is a key part of informed consent: part of our Patient Centered Principles, which recognizes that people must have comprehensive, candid information in order to make valid decisions and give informed consent.

It’s been a milestone year for awareness around palliative care. From studies that show early palliative intervention helps cancer patients to live longer to Dr. Atul Gawande’s candid articles and interviews on the struggles talking with terminal patients about death, we are watching a blossoming of patient empowerment.

As part of National Hospice & Palliative Care Month, Compassion & Choices is also celebrating the passage of Right-To-Know Acts in California and New York.  These laws make it much easier for patients to obtain information on all of their legal end-of-life options.   These victories bring the total to 5 states (including Oregon, Washington and Montana) to embrace laws around end-of-life choice.

There’s still much to do. We know that interventions designed to improve doctor-patient communication still have a lot of room for improvement. And there are still many states that don’t have patient-centered health care laws on the books or as part of medical standard of care.

We’ll be highlighting much of the good stuff on hospice and palliative care this month at Twitter and Facebook. Join us!

The Long Shadow of the Bishops

Do you remember where you were on November 17th when you heard about the vote to change healthcare delivery throughout America?

Chances are, you don’t remember because you didn’t hear the news – that day or any day since. It has been little reported in the media. But Compassion & Choices understands what this will mean for your healthcare choices. And the impact of the decision is greater than you can imagine.

I’m not talking about anything that happened in Washington, D.C., but in nearby Baltimore, where 500 Bishops voted to order Catholic institutions to require feeding tubes for all permanently unconscious patients, regardless of their advance directive instructions or family wishes.

The vote by the United States Council of Catholic Bishops (USCCB), directed a change in its “Ethical and Religious Directives for Catholic Healthcare Services,”  and I have written about the authoritarian nature of these Directives – on Catholics and non-Catholics alike.

The new language in Directive #58, creates “an obligation to provide patients . . . medically assisted nutrition and hydration” in all instances except when a patient is actively dying.

The revised Directive fails to respect settled law that empowers patients with the right to refuse or direct the withdrawal of life prolonging care, including artificial nutrition and hydration. The Supreme Court in the case of Nancy Cruzan recognized that such a choice is a fundamental liberty guaranteed by the US Constitution. State courts have reached the same conclusion based on State constitutional law and common law. But the Bishops have demonstrated no interest in patient choices that conflict with their Directives.

In the summer of 2000, Archbishop Justin Rigali of St. Louis forced Steven G. Becker to leave a Catholic hospital in St. Louis and go home to die. Rigali overruled a  decision to remove a feeding tube that had been approved by a court decision, advised by the hospital’s ethics committee and requested by Becker’s wife Christie, in keeping with her husband’s wishes. Rigali is now chairman of the Bishops’ Committee on Pro-life Activities and participated in crafting the newly adopted language in Directive 58.

Modern Healthcare reports,

“One solution to the issue was offered by John Haas, president of the National Catholic Bioethics Center and consultant to the U.S. bishop’s Committee on Pro-Life Activities, which helped draft the new Directive along with other groups. He said that if attempts to resolve a conflict over a feeding tube by talking through the issue failed, the patient or their legal guardian are free to seek care elsewhere.”

And Catholic commentator Michael Sean Winters writes in America, The National Catholic Weekly,

“And, if she doesn’t like the way Catholics do health care, go somewhere else. It’s a free country and there are no guards at the hospital doors. And, if there is no other hospital to go to, start one.”

This is the scope of the bishops’ order:
•    Catholic health care systems and facilities provide services in all 50 states. Services encompass acute care, skilled nursing, hospice, home health, assisted living and senior housing. Catholic institutions include:

•    624 Roman Catholic-affiliated hospitals.
•    499 nursing homes.
•    48 Catholic Health Maintenance Organizations (HMOs).

•    Catholic hospitals employ 525,193 full-time employees and 233,934 part-time workers.
•    More than 5.5 million patients were admitted to Catholic hospitals during a one-year period.
•    8 of the top 13 non-profit hospital systems in the country are Catholic health systems.
•    The Directive conflicts with all advance directives that decline artificial nutrition and hydration in the setting of permanent unconsciousness or advanced dementia.
•    Catholic health care is especially concentrated in some states and communities. In certain areas, including many of the nation’s poorest, it’s the only option.

•    Over 30% of patients in Washington, South Dakota, Iowa and Alaska are in Catholic hospitals, which are now unable to honor advance directives that decline tube feeding.
•    Catholic institutions provide more than 20% of care in Oregon, Montana, Connecticut, Colorado, Wisconsin, Michigan, Minnesota, Kansas, Oklahoma, Missouri, Arkansas, Illinois, Indiana, Ohio, Nebraska, Idaho, and, North Dakota.

and the population the Bishops’ Directive will impact:

• About 300,000 people receive feeding tubes each year. Roughly 75% are 65 years or older.
74% of Americans believe close family members should be the ones to decide medical treatment for a family member who cannot communicate his or her own wishes.

Apologists for the Bishops like to talk of the charitable nature of Catholic institutions, but taxpayers pay for health care to conform with USCCB Directives:

• Religiously sponsored hospitals in the United States bill the government more than $40 billion a year, while using religious doctrine to restrict medical care.
• In order to obtain public funding and still place its religious beliefs above the medical needs and individual conscience rights of its patients, Catholic and other sectarian health care providers have sought and obtained special government accommodations that have permitted these institutions to refuse to provide services they deem morally objectionable, while remaining eligible for public funding.
• Combined Medicare and Medicaid payments accounted for half the gross patient revenues of religiously sponsored hospitals in 1998. The other half came almost entirely from insurance companies and third party payers, not from churches or other religious sources.
500 Bishops voted November 17th to overrule the advance directives of millions of Americans and almost no one reported it. Compassion & Choices is spreading the word, and will keep you up to date as the Bishops move to implement their latest Directive.