At Compassion & Choices we encourage people to plan for death so they can enjoy life. If you already understand the importance of completing an advance directive, then communicating with your physician is your next step. The day you start considering end-of-life options is no time to discover your doctor’s values and beliefs don’t match your own. If on the other hand, you learn now that your doctor does support your making choices, you can rest easy in that relationship.

There are plenty of stories of doctors who aren’t forthcoming about prognosis, avoid discussing hospice, and disregard advance directives. In most cases, Americans end up dying in the hospital when they would prefer to spend their last days at home. In the worst cases, people whose wishes are denied suffer a traumatic and painful death.

Fortunately, there are many wise, forthright and compassionate doctors prepared to be your companion and ally. You will find them eager to offer cure, care and expert advice, but also willing to let you direct the last scene of your life, when it comes to that.

This post comes in praise of physicians who put the “care” in healthcare. I think, of course, of icons likeDr. Timothy Quill, who wrote A Midwife Through the Dying Process, and all those who came under his magnificent mentoring. I think of the gentle doctor who sat at my mother’s knee and cried as he broke the news that her husband of sixty years was gone. I think of the researchers and practitioners at Dartmouth Medical School who lead an emerging “slow medicine” movement to put the brakes on aggressive, intrusive procedures for frail elderly. I think of those who know “truth” and “hope” are not mutually exclusive and a doctor’s job is to share both. How do you find one of them?

At Compassion & Choices we often tell people to interview their doctor. You might like some clues now to what your doctor’s approach might be later. What kind of question would get your doctor to open up?

I recommend starting with a positive, upbeat declaration that, by gum, you feel healthy, you love life and you intend to savor its fullness as long as humanly possible. But you also believe in preparedness, and you’d like to make sure the two of you would be on the same wavelength in an end-of-life situation. Try one of these questions:

* Doc, if I had an illness that looked pretty grim, how would you feel if I wanted to take a pass on the heroics and let nature take its course?
* I wouldn’t want my family fighting over keeping me alive if I were in the condition of Terri Schiavo, with no chance of recovery. How would you handle a situation like that?
* What if I were dying and really struggling with pain or other agonies? Would you prescribe enough pain medication and sedatives to keep me comfortable, even if it meant my life might be a little shorter?

Above all, value humility in your physician. Find a doctor who utters the words, ”I don’t know” and you’ve found true gold.

Happily, the time is gradually passing when the doctor’s only source of pride lies in “doing everything” possible to prolong life. Some also take pride in serving as midwife to a good death.

I spent my formative years as an intensive care nurse, and to my everlasting shame, I pushed down tubes and pounded on chests and delivered electric shocks to many whose greatest need was for a little quiet time and the caress of their beloved. Treasure the doctor who might respond to a family asking that “everything” be done, in the way suggested ten years ago by Duke University physician David Pisetsky:

“I would like to say, ‘Family, only you can do everything. Only you can talk of your love and give kisses before the skin is cold. Only you can talk of the future and of dreams to be fulfilled. Only you can talk of the past when life was resplendent because time seemed infinite. Family, only you can oppose the flow of time and enjoy one last day together. Only you can give peace and sustenance for the next journey. Family, only you can do everything. I am only a physician. I can do nothing at all.’”

Find a doctor like that!

New Haven Register
By Ed Stannard, Register Metro Editor
March 9, 2010

HARTFORD — The question of whether a doctor can be charged with manslaughter for helping a patient end his life came before a Superior Court judge Monday.

The state, represented by Associate Attorney General Perry Zinn-Rowthorn, sought to persuade Judge Julia Aurigemma that a suit by a right-to-life group should be dismissed.

On the other side, Daniel Krisch, representing two doctors who sued the state, argued a doctor helping a terminally ill patient die with dignity should not be arrested under the state’s assisted-suicide law.

The law says helping someone commit suicide is second-degree manslaughter, a Class C felony. The plaintiffs claim a doctor prescribing medication to a terminally ill, mentally competent patient is providing end-of-life care, not aiding suicide.

Zinn-Rowthorn said the suit, seeking a declaratory judgment from Aurigemma, is improper because it is asking the judge to legislate. Ruling for the doctors, he said, would “risk serious harms to public health and it would intrude on the legislators’ prerogative” to decide public policy.

Among Zinn-Rowthorn’s reasons were that there is no patient who is in imminent need, so the medical state of anyone requesting this assistance is unknown.

He said the General Assembly has refused to change the law to make an exception for doctors, but a bill introduced last year had “14 pages of definitions, of restrictions, oversight, check that were built into the legislation.”

There would be no such protections if aid in dying was approved by a judge’s order rather than legislation, he said.

Krisch argued “there is a growing consensus” in the medical community differentiating suicide from aid in dying. “This is an appropriate medical treatment option for patients to be able to discuss with their doctors,” he said.

He said the doctors involved have had patients request medication to end their lives, people who are “suffering real, horrible diseases … facing very real, very hard choices.”

Watch the video of patient Sheldon Smith at the New Haven Register>>

Krisch said if doctors were allowed to prescribe lethal medications the legislature would create needed safeguards. “Doctors are not going to go around willy-nilly. Doctors are bound by medical ethics,” he said.

“It won’t be the Wild West of aid in dying.”

READ OUR PRESS RELEASE HERE>>

Washington Death with Dignity Report for 2009 Shows Death with Dignity is working as expected.

Compassion & Choices of Washington (C&C), a nonprofit organization advocating for better end-of-life care, patient-centered care, and end-of-life choice, today reported on its 2009 experience with the Washington Death With Dignity Act (DWDA).

Listen to the press conference.

Two Washington physicians and a terminally-ill Issaquah woman told a Seattle Public Library news conference marking the one-year anniversary of the Act that patients have benefited from the peace of mind the Act provides.

“Our experience has been that terminally-ill patients and their families are benefiting from physician aid in dying,” said Dr. Tom Preston, Medical Director of C&C of Washington. “With those terminal patients who have qualified to use the Death With Dignity Act, I have observed peaceful dying. There has been overwhelming gratitude from patients and their families. Because the family is with the patient at the end of their life, all can say their goodbyes. As studies of the Oregon experience have found, families are more at peace with the loved-one’s death than families of other patients.”

Kathy Sparks of Issaquah, a former hospice nurse with Stage 4 Melanoma, told the news conference that the Death With Dignity Act provides her with peace of mind. “I have witnessed many deaths working in hospice: some peaceful, some painful. Now, with my own terminal illness, I’m very grateful for our Death With Dignity Act. I don’t want to die; I’m trying very hard to live. I’ve undergone chemotherapy several times. I’m going through experimental treatment now to gain some time,” Kathy said. “The spiritual part of me is hopeful for the very best in my final days. The nurse part wants to be prepared for the worst. I’m very grateful that my own doctor will respect my end-of-life decisions. I intend to acquire a prescription to provide me with peace of mind and some measure of control for a peaceful death. I don’t know if I’ll even take the prescription. But having it and the choice to use it to aid in achieving a peaceful death is of great benefit to me.”

“Aid in dying practice in Washington has been safe, legal and rare,” said Dr. Preston. “Patients can discuss this with their physicians as one of a full spectrum of care options at the end of life. It is never too early to begin a discussion with your doctor about the options you would want to consider if you were diagnosed with a terminal illness.”

The Washington State Department of Health reported that during 2009 more terminal patients received prescriptions than used those prescriptions to help ease their imminent deaths. Based on total Washington mortality for 2008, deaths under the law represent less than 1/10th of one percent.

“The report’s data on the circumstances of death sketch a peaceful picture. Most of the patients were enrolled in hospice and died at home. Almost all those who took their medication achieved unconsciousness within ten minutes and there were virtually no ill side effects,” said Barbara Coombs Lee, President of Compassion & Choices, the national organization that serves terminal patients and their families throughout the U.S. “It is hard to draw too much from statistics, but most of the participants cited loss of autonomy and loss of dignity as concerns, and the data on circumstances suggest they maintained a sense of both at the end.”

Dr. Robert Thompson, MD, is a General Practitioner Internist in Seattle. Three of Dr. Thompson’s terminally-ill patients have asked him for aid in dying and each benefited from the option in different ways. “One is still alive today. One died in her sleep, but was greatly reassured by having her prescribed medications in case she needed them for a peaceful death. The third was himself a physician, with metastatic cancer in his bones. He took the medication and died peacefully according to his own values and choices,” Doctor Thompson said.

“The reports required under Washington’s DWDA confirm the safety of physician aid in dying. The law is working as voters intended,” said Dr. Tom Preston. “Doctors can feel safe responding to requests from their patients for aid in dying. The practice is having a significant, positive impact on Washingtonians’ end-of-life experience, even though being infrequently used. Knowing they can access prescribed medication and take control of their dying if suffering becomes intolerable, improves patients’ quality of life in their final days.”

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Two prominent newsmen bared their souls – and their stories of a loved one near death from a devastating illness. British broadcaster Ray Gosling divulged a hospital visit years ago. Responding to the intolerable pain of his lover, near death, Gosling said he “picked up the pillow and smothered him until he was dead.” Wednesday, MSNBC’s Keith Olbermann shared the story of the crisis that led his father to ask Keith for any relief, even death. Olbermann had the presence of mind to approach a physician, and request the sedative that relieved his father’s pain and panic.

I have no desire to contrast the acts of these two men. Their stories touch us deeply, but we stand in no position to second-guess their actions in a desperate situation. But we have much to learn from their stories because there is every chance that each one of us will find ourselves in a similar room, pleading for relief, or standing by the bedside searching for the best response.

Gosling told his story briefly as the camera followed his walk through a graveyard. His partner was suffering from AIDS. “In a hospital one hot afternoon, the doctor said ‘There’s nothing we can do,’ and he was in terrible, terrible pain.”

Western medicine is a remarkable profession and I practiced as a physician assistant for over twenty years. Its culture rests on diagnosis and treatment. When people’s bodies go wrong, we find the cause and fix it. But the third, indispensable thread in the culture is caring, and relief of suffering. When their inability to find a cure frustrates physicians and they forget to care, their patients and those close to their patients feel abandoned, which can be harder to bear than death itself.

Too many terminally ill patients suffer with under-treated pain. Too many feel abandoned because their physicians forget about their duty to relieve suffering and conflate “incurable illness” with “hopeless situation.” And too many loved ones resort to extreme, violent and desperate acts when support is lacking and legal options seem inadequate. Instead of counting on a family member to pick up a pillow, patients should be able to talk with their doctors about a range of legal, safe, peaceful options for easing a painful dying process. Suffering, from the patient’s perspective, should be as much the doctor’s concern as machines and lab results.

Olbermann spoke at length about the long fight his father waged against a series of infections and complications. “Pneumonia, three or four times — I’ve lost count. Kidney failure, liver failure . . .” Five nights before his broadcast, Olbermann found his father thrashing in his bed, repeatedly mouthing, “Help,” “Stop this” and eventually, “Kill me.”

When I went to see the Surgical Intensive Care Unit resident I told him my Dad had hit his wall. That he couldn’t take any other work, that it was now terrifying torture, that he needed it to stop. But I said, look, I’m his health proxy, we’ve had conversations about end-of-life care — we’ve had them in here, we’ve had them when he was home and well, I’m not operating in the dark here. I said I think he really wants the one word he keeps mouthing: He wants help. Is there any medical reason not to give him some sedation, a little mental vacation from being a patient?

The sedation worked. Olbermann reports his father remains comfortable and breathing well, but has not awakened.

He’s not being sedated anymore; he only has the strength to fight off the infections, or wake up — not both. We’re hoping he does the first, then the latter. We’re prepared for the probability that he will do neither. His team and I had another “life panel” discussion not six hours ago. And thank God I had those conversations with my father.

At this writing we still hope for his recovery. If he does not, we wish his family peace, and a measure of consolation in the small triumph, that when Dad was speechless yet crying for help, they were able to ease his pain.

Too many suffer needlessly. Too many endure unrelenting pain. Too many turn to violent means. We can, we must, do better.

Keith Olbermann, MSNBC

Compassion & Choices, the nation’s oldest and largest nonprofit working to expand end-of-life care and choice, today applauded the intent of a Massachusetts measure to legalize physician aid in dying, but expressed doubts that the Legislature will vote to support patients’ rights to make their own end-of-life decisions. “Too many Americans suffer needlessly and endure unrelenting pain,” said Barbara Coombs Lee, president of Compassion & Choices. “This measure contains good, proven public policy that is now the law in Oregon, Washington and Montana. It’s unfortunate that so many politicians fail to serve the people who want and need this choice.” Not all citizens have the opportunity to vote directly on Death with Dignity proposals, like those in Washington State, which passed it by a large margin.

Oregon’s 11-year experience teaches that end-of-life choice has benefited not only the patients who used the law, but all Oregonians facing the end of life. All dying patients in the state benefited from improved care from physicians and health care providers, increased use of medical morphine, increased referrals to hospice, the lowest rates of in-hospital deaths and the greatest opportunity to die at home among loved ones in the nation.

National surveys over twenty years have shown a large majority of Americans support making physician aid in dying a legal choice. “Americans want choices in all aspects of their lives. The right to choose how we die echoes the right to choose how we live,” said Coombs Lee. “Because such an overwhelming majority holds this view, one day everyone will know the comfort of choice and control. It is time for federal and state governments to honor the will of the people and legalize aid in dying.”

READ THE PRESS RELEASE HERE >>

Compassion & Choices, the nation’s largest and oldest nonprofit organization working to improve care and expand choice at the end of life noted today that it has been named a resource in USA Today’s The Mom’s Guide to Wills & Estate Planning.

READ THE PRESS RELEASE HERE >>

By JEFF BARNARD Associated Press Writer
Feb 16, 2010
GRANTS PASS, Ore. (AP) — The Catholic Church is ending its long-standing relationship with St. Charles Medical Center in Bend over a surgical birth-control technique.

Diocese of Baker Bishop Robert Vasa said Tuesday the church can no longer sponsor the hospital because it continues to offer tubal ligation, which leaves women unable to get pregnant and is specifically prohibited by church teachings. “Pregnancy itself is not a disease, even though in our culture we treat pregnancy as a disease,” Vasa said. “So this prevents the function of a properly functioning organ under the guise of health care.

“It would be misleading for me to allow St. Charles Bend to be acknowledged as Catholic in name while I am certain that some important tenets of the Ethical and Religious Directives are no longer being observed.” Catholic Mass will no longer be celebrated in the hospital chapel, and church property not needed by the hospital will be returned, Vasa said.

The name of the hospital remains St. Charles, and the decision does not apply to affiliated facilities in Redmond and Prineville, which never were tied to the church, Vasa added. The hospital does about 235 tubal ligations a year, and Vasa and the hospital had been in negotiations over the issue for a few years. They finally decided that neither could bend from their positions.

“We just felt we have been offering these procedures for decades and we have an obligation to the patients in our community to offer the procedures they need,” said James Diegel, president and CEO of Cascade Healthcare Community President, the hospital’s parent company. “This should have no impact on our operations or finances or anything. It’s just a severing of an historical relationship that has been in place for 90-plus years.

“The hospital was founded in 1918 by the Sisters of St. Joseph of Tipton, Ind., and the order’s last administrator retired in 1988, serving on the board until 2000. The hospital was taken over by a local nonprofit organization in the 1970s. The hospital would continue to look to church directives for guidance, Diegel added.

“This doesn’t change who we have been, who we are and who we will continue to be going forward,” Diegel said.

READ THE PRESS RELEASE HERE >>

 Jacob M. Appel, Bioethicist and medical historian

The Huffington Post

Posted: February 10, 2010 05:31 PM

Catholic hospitals, which boast a long and admirable history of caring for the seriously ill and indigent in the United States, have for many years finessed the challenges of serving two disparate and often incompatible masters. On the one hand, the nation’s 573 Church-run hospitals and their physicians are not permitted by Vatican policy to offer services or advice to patients when doing so violates Catholic teaching. In theory, prohibited activities range from providing abortions and assisting suicides to urging patients with HIV to wear condoms when engaged in unprotected sex or telling bipolar women on lithium to use contraceptives to prevent birth defects. On the other hand, these hospitals–which serve about one third of all patients in the nation–are also quasi-public institutions, and their physicians and nurses are bound by the same ethical obligations that govern all other members of their professions. They must obtained informed consent, honor patient autonomy, and offer medical care in line with the clinical standards of their colleagues at secular institutions. While a latent tension often exists between these competing allegiances, two recent developments relating to Church policy have set medical ethics and Catholic doctrine on an unfortunate collision course.

The first of these disturbing Church salvos against mainstream medical ethics is to be found in the newly promulgated Directive 58 of the United States bishops’ body governing Catholic health care services. This edict states that, barring certain specific circumstances, such as imminent death, Church doctrine prevents competent patients from refusing artificial nutrition and hydration. William Grogan, a religious advisor to Cardinal Francis George of Chicago, explained to the media that death would have to be expected within two weeks for a patient to turn down a feeding tube. In other words, according to current Catholic teaching, a cancer patient in a coma with a life expectancy of four weeks must now be force-fed–no matter what his prior instructions stated and without regard to his family’s wishes. All comatose and vegetative patients will be required to accept nutrition and hydration indefinitely, even if they leave behind air-tight living wills objecting to such “heroic” and invasive measures. This extreme policy apparently applies to all patients receiving care in Catholic-run hospitals, whether or not they are Catholic. Since United States courts have consistently accepted that mentally-competent patients have a right to refuse care if their wishes are clear and documented, these rules may well be illegal. However, even if Directive 58 is not a violation of the law, it is a gross breach of accepted standards of medical ethics. No doctor or nurse in the United States may provide such unwanted nutrition and hydration without defying a well-established code of professional conduct. It is likely that any provider who acted in this paternalistic and unequivocally immoral manner would lose his or her license. In the very least, the provider would become a pariah among his colleagues.

A second Church-instigated challenge to medical ethics has arisen as a result of a grass roots protest by anti-abortion organizations in Pennsylvania against the well-regarded St. Mary’s Medical Center of Langhorne. In this case, Dr. Stephen Smith of St. Mary’s performed an ultrasound on an expecting mother and confirmed that the fetus had polycystic kidney disease, a fatal condition in infants. Smith recommended an abortion. When the pregnant women sought a second opinion, a midwife at Mother Bachman Maternity Center in nearby Bensalem, operated by the St. Mary’s, also recommended termination. The mother refused, which was certainly her prerogative, and the infant died two hours after birth. When local abortion opponents publicized Smith’s advice, a private citizen named Joseph Trevington demanded a formal review of St. Mary’s by the local archdiocese. The results of this ethics investigation are not yet publicly known, and may never be revealed, although a diocese spokesman stated that changes in the hospital policies are to be expected.

The very decision to conduct such a moral audit displays a chilling new direction in Church practice. As a matter of doctrine, Catholic hospitals require employees to “respect and uphold the religious mission” of their institutions as “a condition for medical privileges and employment.” So, in theory, any physician endorsing abortion (or vasectomies, birth control, withdrawal of life support, etc.) while on the hospital premises should be relieved of his duties. As a matter of Catholic doctrine, Trevington and his anti-abortion brethren appear to have the better half of the theological argument, at least when it comes to consistency and the letter of the law. At the same time, allowing Church dogma to dictate the medical practices of physicians clearly violates the most basic tenets of healthcare ethics. Dr. Smith had a duty to offer advice to his patient based upon his best independent professional judgment–which he apparently did. The Hobson’s choice that he faced–either to follow the Catholic “law” enshrined as policy or to adhere to medical obligation–was unreasonable and unacceptable.

Both of these events expose the dark and unspoken (although widely understood) secret that enables Catholic hospitals to practice first-class medicine: Official Church policy on matters such as contraception and end-of-life care, like much Catholic doctrine more generally, is largely honored only in the breach. I have known many excellent physicians over the years, both religious and secular, who work at Church-run hospitals. All of them advise women taking medications that cause birth defects to use contraception and tell HIV-infected patients to use condoms. Many offer direct counseling on abortion, certainly when fetal prognosis is grim. I cannot imagine any of these gifted doctors would force-feed an unwilling cancer patient in violation of an advance directive or a health care proxy’s wishes. Much like the absurd loyalty oath that New York’s college professors–myself included–take to uphold the state’s constitution, any pledge to support Catholic doctrine on medical matters is broadly viewed as a formality to be agreed to and then summarily ignored. Historically, the Church has looked the other way. Now, by challenging this longstanding system of benign neglect, bishops and grass roots zealots may believe they will achieve ideological purity. What they are actually doing is jeopardizing both the welfare of Catholic hospitals and the public health.

Some concrete thinkers may argue that since Catholic hospitals are “private” institutions, the Vatican can impose any rules that it wants. The claim belies the inherently public nature of the American hospital system. Catholic hospitals–like virtually all other hospitals in the Unites States–are only able to function as a result of a swath of government handouts and subsidies. Medicare and Medicaid pay the bills of almost half their patients. Federal funding supports the salaries of their medical residents. NIH Grants sponsor their research and clinical care. Many of the hospital buildings themselves were erected will federal construction dollars providing by the Hill-Burton Act of 1946. Private businesses may have a claim to considerable leeway in formulating their own rules and policies–although even “mom & pop” stores are reasonably prevented from excluding African-American customers and are often required to accommodate disabled shoppers. In theological matters, the Pope is certainly free to issue any decree he likes and those who wish to follow his dictates are entitled to do so. In contrast, Catholic hospitals function as public entities that serve people of all faiths and traditions. A patient in a medical emergency is taken by ambulance to the nearest hospital, not the nearest hospital that shares his social values. A system that operated otherwise would lead to logistical chaos and increased mortality. Once one accepts the premise that Catholic hospitals are public institutions, they have a moral obligation to comply with generally accepted standards of patient care and professional ethics. Today’s hospitals are far more Caesar’s than they are God’s.

One of the greatest triumphs of modern health care in the United States is the rise of nonsectarian service. In an earlier era in New York City, for example, Jews sought care at Mount Sinai while Protestants preferred Presbyterian Hospital and Catholics chose St. Vincent’s. Now, most patients–and all wise ones–choose their health care providers for clinical skills and personal attributes, not religious labels. As a result, the majority of patients at Catholic hospitals are not Catholic. To impose orthodox Catholic doctrine on these non-Catholic individuals at the most vulnerable moments of their lives would be the most significant Church intervention in the lives of non-adherents since the Inquisition. Doing so would also threaten the ability of physicians to practice at Catholic hospitals without violating their professional codes of ethics. In light of these developments, any patient currently receiving care in a Catholic-run hospital should immediately clarify with her doctor whether this physician will follow the patient’s own end-of-life wishes regarding so-called heroic measures if they come into conflict with Directive 58.

The Catholic Church has every right to announce and publicize its views on certain medical interventions and to declare that Catholics who engage in certain conduct are violating the rules of the Church. It’s the Pope’s club. He can make the by-laws. He does not have any business imposing such rules on third parties who do not wish to follow them. It will be a sorry day if American patients seeking the best medical care are forced to avoid Catholic hospitals for fear of having their living wills ignored or their doctors’ counsel dictated from Rome. The Church would be wise to focus its energies on theology and to leave the practice of medicine to the professionals.

Read this post at its original site at The Huffington Post.