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“Doctor, Please Help me Die”

10:31 am in Uncategorized by BarbaraCoombsLee

Dr. Tom Preston, a Compassion & Choices leader in Seattle, chose these poignant words for the title of his new book. They are powerful words, gripping even on paper. Imagine them emerging from the lips of a patient, perhaps one whom the doctor has treated over decades, who is now dying of cancer. They strike right at the core of a physician’s identity, training and moral compass.

A syringe with a droplet on the needle

How far should doctors be allowed to go to ease the suffering of terminally-ill patients?

Preston knows well that each person, each healer and each caregiver responds to such a request from patient or loved one from the deepest parts of their own authentic being. He begins his book quoting Dumbledore, who in the last Harry Potter book pleaded with Snape to cut his dying short. “You alone know whether it will harm your soul to help an old man avoid pain and humiliation,” the wizard tells his reluctant friend. So it is with every doctor In America.

I recall hearing Dr. Peter Goodwin, Compassion & Choices’ leader and dear friend who died last March, describe how his “blood ran cold” the first time he heard these words. He responded to his patient he could not, but spent the remainder of his life regretting that answer.

Last month Dr. Eric Kress testified to the Montana legislature that when he refused the first patient who asked for his help in dying, the patient reacted in disgust and called him a coward. Thus began his own soulful rumination and his decision not to abandon subsequent patients who asked for his help. “What kind of man am I?” he asked himself. “What kind of doctor am I?”

Preston writes from his long and passionate interest in how doctors respond to this plea. By extension, he is also vitally interested in the historic and potential relationship between the field of Medicine and patients who yearn for choice and control in their dying. Today, it’s mostly a dysfunctional relationship. But it has not always been so, and this book may well help heal the dysfunction.

Preston is a fine writer, and a splendid historian. I greatly enjoy his reaches into ancient Greece and Medicine’s dawn as a profession. In one enlightening chapter he traces the transformation of medical oaths, “From Hippocrates to Lasagna,” to demonstrate how politics, religions and accidents of history influence the words and meanings that endure, even when at odds with ancient precepts or practices. Personally, I’ve always been fascinated to observe that sometime in the course of history the caduceus, symbol of Mercury, god of thieves and business, came to replace the staff of Asclepius, son of Apollo and the first mortal healer, as the symbol of Medicine. (That’s right, the patron god of financial gain stands as the profession’s symbol in modern times.)

Another of Preston’s great contributions is his concentration on “patient-centeredness” as the mark of excellent care. Preston acknowledges that his colleagues may pay lip service to the term, while actually delivering “physician-centered” service. Therefore he takes care to advocate a “meaningful” patient-centered approach. One of the speakers at this year’s TEDMED conference noted that even “patient-centered care” can mean that professionals circle the patient and impose a one-way dialogue.

Non-physician readers will find in Preston’s words the reassurance, courage and tools to approach their doctors with legitimate requests arising from their experience in health and in decline. Physician readers will find compassion and gentle guidance in adopting an open and responsive attitude toward the needs of their dying patients. Physicians across the nation are examining their position on intention and assistance in dying, and this book is bound to help.

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Oh, Freedom

4:03 pm in Uncategorized by BarbaraCoombsLee

Michael Morgan, founder and Executive Director of the African American Music Foundation, visited my church this week to celebrate Black History Month. During morning service his thrilling bass voice highlighted an inspiring memorial to Paul Robeson. That afternoon he delivered a recital and lecture on spirituals to an overflow crowd.

I’ve been humming these spirituals and mulling their words ever since. Mr. Morgan is charismatic and riveting and he adores spirituals. As he explained, this is not only African American music. It is American music — never composed, but arising organically from the depths of human experience and longing.

Often beginning in woe but always ending in joy, the words of spirituals express struggles against injustice, oppression and the sadness of mortality. So many of them, like “Swing Low Sweet Chariot” and “I Stood on the River of Jordan,” give voice to our hopes and fears in the face of death. They arch beyond American slavery to express hard truths about the burdens every human bears and how we cope.

 

Oh, Freedom

Freedom, oh freedom,

Oh freedom over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

No more moaning, no more moaning,

No more moaning over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

There’ll be singin’, there’ll be singin’,

There’ll be singin’ over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

That song is about all kinds of slavery, Mr. Morgan said. “Think about it. There’s a whole lot of things you can be slave to in your life.”

Indeed there are.

Increasingly, people feel in jeopardy of being slaves to medical technology and an imperative to apply all that is available. As awareness grows, people grow leery of the assumption they would choose to eke out every second of mortal existence, even as terminal disease ravages the body and suffering exceeds the ability to bear it.  Often slavish devotion to prolongation of life means only prolongation of suffering.

In his book, Facing Death, my friend Reverend Paul Smith reminded us that death is not the worst thing that can happen to a person.  When we act as though it IS the worst thing, we can fall victim to much worse.

Choices mean freedom. Freedom from all that may be worse than being “buried in my grave.”

Vote Like Your Future Depends on It

8:49 am in Uncategorized by BarbaraCoombsLee

This election season is extracting an enormous toll from candidates and citizens alike.

Pressure is always intense in a Presidential year, but this year is different.  Airwaves and Internet hammer away with news of poll after poll, minute campaign details and endless tit for tat. The presidential race, Senate and House races — even local campaigns — all occupy space in national media. Twenty e-mails appear in my inbox by noon each day, all URGENT and all pleading for funds.

The money flow is mind boggling. According to followthemoney.org, state races alone have raised almost $1.2 Billion.  OpenSecrets.org reports that each presidential campaign has raised and spent almost a billion dollars.  And of course, this doesn’t include the biggest spenders of all, the super PACs.

The world watches in wonder and dismay, and my sense is most Americans just want it to be over.  It’s understandable that people might block out the noise and ignore politics altogether in an attempt to restore balance and sanity to their lives. For those ready to run screaming from the computer or TV, sit out the election and withhold their vote, I have two words:

Supreme Court

Politicians come and go, but ultimately the strength of our democracy and the breadth of our freedom depend on these nine lawyers.  Questions of end-of-life choice provide a good measure of the power of these individuals to either invade — or respect — the autonomy and dignity we enjoy as Americans.

  • In 1990 the U.S. Supreme Court ruled that Nancy Cruzan should be relieved of her feeding tube if clear evidence was that she would not want it. It could have ruled otherwise.
  • In 1997 The U.S. Supreme Court let a Ninth Circuit ruling stand, essentially telling litigants from National Right to Life they had no standing to block Oregon’s Death with Dignity Act. (Lee v. Oregon)  Right to Life lawyer James Bopp failed to persuade the Court that Oregon’s law represented a risk or injury to his client.  Yet the Court could have been persuaded otherwise, and our law could have been enjoined forever.
  • Four times in 2005 the U.S. Supreme Court refused to intervene in the Schiavo case. Refusing to grant certiorari, the Court left intact Florida rulings that Terri Schiavo’s husband acted according to her wish not to be maintained in an unconscious state. But it could have ruled otherwise, and stepped in as Congress did to meddle in an intensely private decision.
  • In 2006, with Justices Roberts, Scalia and Thomas dissenting, the U.S. Supreme Court upheld Oregon’s right as a sovereign state to regulate doctors and determine the boundaries of legitimate medical practice. Six Justices Blocked U.S. Attorneys General Ashcroft And Gonzales in their quest to stop Oregon’s Death with Dignity law. It could have been otherwise, and the federal government could easily have usurped state authority over medical use of controlled drugs.  This would have given the party in federal power the ability to intrude in every State’s medical practice standards.

If you are disgusted at the sorry condition of our political contests and tempted to let this Election Day pass without registering a vote, please don’t.  Think on your sacred freedoms and know how fragile they are. Vote as though your future depends on it. It does.

Peter Goodwin, Pioneer for Human Liberty

1:09 pm in Uncategorized by BarbaraCoombsLee

Eighteen years ago, Dr. Peter Goodwin led the fight to grant Oregonians the right to end-of-life choice. I was honored to work alongside Peter as a co-campaigner and call him a friend. Both as a physician and an advocate, he promoted honesty in facing death. This month he confronted his own approaching death with the same honesty. Terminally ill with a rare, fatal brain disease with no known cure, Peter exercised the right to a peaceful death he helped secure.

Without Peter, Oregon’s Death with Dignity Act (DWDA) simply would not exist, nor would our national movement be where it is today. He is a hero of mine. A pioneer for human liberty, Peter had the courage to talk about death openly in a death-denying culture. Though not a political person, he exposed himself to the rough and tumble of the political arena, a sacrifice in service to compassion at the end of life. Even in the face of determined opposition, Peter campaigned tirelessly and never lost faith or focus.

Peter, Elven Sinnard and I were the chief petitioners for the ballot measure that led to the legal aid in dying in Oregon. Peter called his accomplishments as chair of the committee to pass the DWDA in the mid 1990s “the most gratifying of my entire life.” He was instrumental in persuading the Oregon Medical Association to remain neutral in 1994 and assembled physician colleagues to stand in contrast to the Association’s opposition in 1997. After implementation began, Dr. Goodwin helped launch Compassion & Choices of Oregon and became its first Medical Director.

His dedication never flagged. In the past month, knowing he had only weeks of life remaining, he gave generously of his time, granting multiple interviews on his life’s work and the importance of end-of-life choice. Speaking on camera, he talked about his work on aid in dying, and his approaching death.

Peter began medical practice as a surgeon. He ended it as a role model and educator in family practice, promoting healing and growth from the beginning of life to its end. He said no experience was more powerful than interacting with dying patients. Here he talks about abiding by and caring for patients as they approached death. Read the rest of this entry →

Bishops Step Over the Line

11:54 am in Uncategorized by BarbaraCoombsLee

Over and over we see the U.S. Conference of Catholic Bishops confuse the right to exercise their religion with a right to impose their religion on Americans who don’t share it. This is not a subtle difference.

And, as Bill Moyers points out in the context of their intransigence on access to birth control, the bishops aren’t content with an exception from the rule that, like other employers, they provide birth control coverage to workers in their hospitals and universities. They also want to be able to keep their employees from obtaining birth control pills from a third-party insurer, at no cost to themselves.

This stance grossly abuses the rights and privileges of American business owners. Let’s face it: Hospitals are money-making operations, dominant in the economy and relying in great measure on government Medicare contracts and employer-based health plans. To allow one very large employer to dictate private healthcare decisions of its employees would distort the American ideal of freedom of religion into a very un-American practice of religious tyranny. The bishops want to control everyone’s moral decisions, Catholics and non-Catholics alike.

In the context of end-of-life choice, the bishops enforce Ethical and Religious Directives for Catholic Healthcare. This document instructs doctors to ignore advance directives that conflict with Catholic moral teaching (ERD #24), requires patients in permanent vegetative states to overcome a presumption in favor of indefinite tube feeding (ERD #58), disallows as “euthanasia” a patient’s refusal of treatment such as kidney dialysis if intended to advance the time of death (ERD’s #59 and 60), and urges employees to offer religious teaching on the redemptive power of suffering when standard comfort care fails (ERD #61).

With regard to Oregon and Washington’s Death with Dignity Acts, the bishops use the machinery of Catholic healthcare to withhold information and support for aid in dying, a legal end-of-life choice. Catholic hospitals, hospices and healthcare systems in those states often impose a draconian gag rule on their employees to deprive patients in their care of comprehensive knowledge of end-of-life choices. As noted by The Seattle Times, the Sisters of Providence healthcare system imposed policy that employees can’t discuss the issue with patients, even if asked. In response, Steven Saxe, director of the state’s Office of Health Professions and Facilities, reassured healthcare workers that all healthcare providers, including those at Providence, have a “protected right to offer basic information” about the law to patients.

An oppressive gag rule not only violates a cardinal rule of informed consent in healthcare, it also tramples the free speech rights and professional ethics of hospital employees and physician contractors.

As with contraception, a free society must find the middle ground. Catholic Bishops must be free to exercise their religion, yet we cannot allow them to deny that same freedom to the rest of us.

Aid in Dying in Montana: A Watershed in the Movement for End-of-Life Choice

10:16 am in Uncategorized by BarbaraCoombsLee

On New Year’s Eve 2009, Montana’s Supreme Court handed down the ruling in Baxter v. Montana and authorized the practice of aid in dying for mentally competent, terminally ill adults. The Court declared that such a patient may request medication that could be ingested to ensure a peaceful death. They ruled that a physician providing such medication does not violate public policy and is safe from prosecution.

It was a remarkable ruling in many ways. With subsequent legislative events, the Court’s findings created a watershed between previous assisted-dying advocacy typified by Oregon’s Death with Dignity Act and the new era, in which patient choice becomes integral to the scope of medical practice at the end of life.

Early in 2010 the medical practice of aid in dying began to take shape in Montana. Terminally ill patients began to ask about this option, now openly available. Willing physicians began to evaluate their requests and measure them against the qualifying standards laid out by the Court. Montana physicians sought guidance from doctors with years of experience in Oregon and Washington. The state medical society engaged counsel to explain the Court’s ruling, and received confirmation that aid in dying was a choice Montanans were entitled to make and physicians providing it were not subject to criminal prosecution. Hospices began to consider policies and practices if a patient requested life-ending medication or decided to self-administer it while under hospice care. One year later patients, families, physicians and healthcare providers across the state already had personal experience – or knew someone who had personal experience – with aid in dying.

When legislators convened in Helena in January 2011, they considered two bills related to aid in dying. One would nullify the Court’s ruling and repeal the end-of-life freedom people had come to appreciate. The other itemized the steps to evaluate a request and provided civil and regulatory immunity for following them. Neither bill passed a committee or reached the Governor’s desk.

Montana residents now enjoy the freedom of knowing one of the most important, private, intimate and meaningful decisions in life is safe from blockade or intrusion from prosecutors or authoritarian busybodies.

Here are some aspects of the ruling that will, from now on, direct the flow of liberty at life’s end:

· The Montana Supreme Court called the practice “aid in dying” and enshrined that name in a legal context. Professional associations, medical and legal scholars, and ethics publications had adopted this term for the medical practice that gives patients peace of mind and control over their dying and distinguish it from “suicide.” But never before had the term of art achieved legal authority.

· Montana recognized that requests for aid in dying were akin to other already permissible end-of-life choices, as contemplated in the autonomy protected under the state’s Rights of the Terminally Ill Act. The Court reasoned if state law protects decisions that advance the time of death of a person no longer able to make healthcare decisions, it surely extends that protection to a contemporaneous decision by one fully capable of assessing treatment options and making a choice. Almost every state has adopted some version of this model Act creating the framework for advance directives. Other states could adopt Montana’s reasoning.

· The Court felt no need to impose additional government oversight or policing procedures on the medical practice it authorized. It trusted the oversight and policing of aid in dying to the same mechanisms that regulate every other end-of-life decision and practice, and indeed all of medical practice. These are the regulatory mechanisms that maintain accepted practice standards: medical peer review, medical licensing and disciplinary proceedings, civil remedies for negligent or reckless acts, and the police authority and criminal justice system in every community. Protected by these mechanisms of oversight, patients regularly make decisions that advance the time of death, and physicians implement those decisions. Patients discontinue life-sustaining treatments like dialysis and ventilation. They ask that cardiac pacemakers and implanted defibrillators be deactivated. And they voluntarily stop eating and drinking and receive medical comfort care as they fast. Medicine is the most regulated and supervised profession in existence, and the controls in place are able to keep aid in dying as safe as other end-of-life decisions.

In 1976 the New Jersey Supreme Court ruled that Karen Ann Quinlan had a right to refuse artificial ventilation, beginning a line of jurisprudence that protects healthcare decisions, even if they advance the time of death. (In re Quinlan) The Quinlan court imposed no extraordinary governmental policing on the newly recognized right. So it is with Baxter, and the Baxter ruling is to aid in dying what Quinlan was to withdrawal of mechanical ventilation. The Montana experience is ongoing, with aid in dying governed by standards of practice and the same regulatory procedures as all medical care. Its impact will likely reach across our nation. As our path leads forward from this point, we draw water from the streams that flow from Montana. Baxter is the watershed.

Aid in Dying 1994 – 2011: Data from Oregon’s “Laboratory” is Complete

11:01 am in Uncategorized by BarbaraCoombsLee

Seventeen years ago the people of Oregon took a bold step in end-of-life care and comfort. By citizen initiative, they adopted eligibility criteria and practice guidelines for terminally ill, mentally competent adults to obtain medication that would ensure peaceful dying. I was one of the drafters of that law, and I have stood by every word ever since. For years, when reporters asked what I would change in the law, I replied “one comma,” to clarify that impaired judgment from any type of mental dysfunction disqualifies a patient from making a request. Subsequently, we did change that comma.

Fourteen years of experience integrating aid in dying into Oregon medical practice, three years replicating that experience in Washington and two years with a different regulatory model in Montana now inform policy-makers. Our work to craft subsequent Death with Dignity Acts and aid-in-dying policies reflects the wisdom gained from practice.

Opponents believed catastrophe would befall Oregon and medical practice would suffer, but the opposite occurred: End-of-life care is robust, thriving and increasingly patient-centered in Oregon. Thousands of patients find comfort every year knowing they do not have to suffer unbearably. No evidence exists of anyone harmed. Opponents’ assertions to the contrary rely on vast conspiracy theories, fraud and cover-up by Oregon hospices and the hospice association, officials at the Department of Health, the medical disciplinary board, and police departments in communities across the state. These scary stories hold no credibility, and polling reveals a full 77% of Oregonians support their Death with Dignity Act.

Proponents believed terminally ill patients want and need assurance they can control the time and manner of their dying, and will apply profound thought and care before ever exercising this control. We believed nothing could override doctors’ drive to cure disease and prolong life, but that as death inevitably approaches, most doctors would allow qualifying patients this measure of comfort. Those beliefs have been validated.

Oregon’s data and experience has revealed other truths. We could not have predicted all of them, but they carry important lessons for our future advocacy:

1. Oregon’s Death with Dignity law says patients may express a “wish to die.” Data and experience contradict this. We now know patients approaching death and planning for peace have no wish to die. They wish only, if death is imminent, that it be as peaceful and humane as possible.
2. Oregon’s law says a physician may provide, and a qualifying individual may receive, medication “for the purpose of ending his or her life … .” Data and experience indicate this statement of purpose is inaccurate. Patients making a request want assurance, and they have made no decision about whether to ingest the medication. Fully 40% of patients who completed the entire qualifying process in 2010 either did not fill the prescription or did not take the medication. Experience teaches the purpose of the prescription usually is to provide comfort and peace of mind. The purpose is to lend substance to the fondest hope – for a peaceful death, at home with loved ones near. The purpose is to improve the quality of life for a dying person. The purpose is not to cause death, for cancer or other fatal disease is already producing that end.
3. Physicians embrace clear practice guidelines. They are eager to conform to the expectations of their peers. Many Montana physicians would have welcomed further guidance from the legislature to round out the broad aid-in-dying parameters laid out by the Montana Supreme Court. Legislators declined to adopt guidelines, so the Court’s public-policy findings guide Montana’s aid-in-dying practice, which is also informed by practice in Oregon and Washington, and relevant authoritative medical literature.
4. As much as doctors embrace practice guidelines, they do not appreciate government-required paperwork and the idea that Big Brother can intrude into the intimate and private doctor-patient relationship. For fourteen years Oregon’s medical community has been heroic and diligent in completing elaborate and duplicate forms for every completed aid-in-dying request and meeting onerous reporting deadlines. Some have faced investigation by the medical disciplinary board for minor technical omissions on these forms. These physicians endured intrusive investigations that never revealed actual violation of the law.

As the U.S. Supreme Court intended, Oregon has served as a laboratory to test the impact of a new end-of-life option on patients, physicians and end-of-life care. Washington’s data and experience reproduced the findings from Oregon. The “laboratory experiment” is complete, and the results will inform our advocacy from now on.

· We will work for policy that reflects community standards, establishes clear guidelines and guides physicians in safe and responsible aid-in-dying practice, without burdensome government reporting on every patient encounter. Bureaucratic paperwork has provided important data demonstrating the safety of aid in dying, but it is not responsible for making the practice safe. As is clear in Montana, physicians meticulously adhere to a standard of practice defined by the bounds of the Court decision, without the needless and intrusive burden of government reporting.
· We will affirm the true purpose of aid-in-dying medication is to provide comfort and improve the quality of life for dying patients. Physicians intend to comfort, and patients intend to acquire the ability to escape unbearable suffering.

As advocates we have defended the law from multiple attacks. As stewards we have guided patients, families and medical professionals through the eligibility requirements, procedural guidelines and reporting duties of aid in dying. As investigators we have observed the law’s provisions play out at countless bedsides, living rooms and kitchen tables across the state. Medical studies, state reports and our own experience inform our “post-Oregon” advocacy. We must not ignore the lessons of Oregon’s data and experience.

Peace at Life’s End – Anywhere

11:00 am in Uncategorized by BarbaraCoombsLee

This week at Compassion & Choices we launch a campaign to educate and empower individuals throughout America who want a peaceful death. We offer people legal options for peace and comfort at the end of life, whether or not they live in a state where aid in dying (ingestion of prescribed life-ending medication) is openly available. Often people outside Oregon, Washington and Montana feel doomed to unbearable suffering, risky self-help or violent means – often a gun – if medical interventions fail them. Peaceful options exist, and Compassion & Choices can help make them accessible and safe.

One method of peaceful dying is universally available, legal, safe, painless and suitable for a gentle parting in one’s own home with loved ones present. This is the purposeful refusal of food and fluids, in medical jargon known as voluntarily stopping eating and drinking (VSED).

VSED made its formal debut in medical literature in 1994 when Dr. David Eddy published his mother’s story in the Journal of the American Medical Association. Mrs. Eddy was 85 years old and suffered a multitude of bodily dysfunctions and deterioration. As her physical health rapidly declined, her life grew more limited and difficult by the day. She asked for her son’s help achieving a peaceful death, and his research led him to suggest VSED. The process went so smoothly, she became something of an evangelist. “Write about this, David,” she implored. “I’d like this to be my gift.”

Young people are often astounded to hear a sane person would refuse food and water. And of course, a healthy and vigorous person wouldn’t. But for those enduring a slow, agonized dying process or losing mental and physical function – as my own mother described, “by inches” – dying can seem the “least worst” outcome. And some would prefer peaceful, painless dying to further deterioration, a medical calamity imposing unbearable suffering, or the prison of an intensive care unit.

VSED features these benefits:

  • It requires no special laws or regulations. VSED is legal– for patients and their caregivers–today, in every state.
  • It requires determination and resolve, so no one can claim a person choosing VSED is acting impulsively or under coercion.
  • It is broadly available. Even those who do not meet the strict six-month terminal prognosis required under Washington and Oregon’s Death with Dignity laws can legally stop eating and drinking.
  • Death approaches slowly, typically within one to three weeks, so loved ones have time to gather, celebrate the life and love of the person preparing to leave them, and grieve together.
  • People with religious objections to aid in dying often accept a loved one‘s VSED choice and feel no moral condemnation.

People are often surprised to hear that twice as many patients in Oregon hospice choose VSED over self-administration of life-ending medication, although the state’s Death with Dignity law has been in use almost 14 years. Some of the attributes above may account for this phenomenon. Compassion & Choices has counseled people through VSED who did not qualify for aid in dying, and at least one client chose VSED over aid in dying to accommodate her religiously conservative daughter.

VSED doesn’t always go smoothly, and we recommend careful planning. Before beginning the program, a person should:

  • Carefully consider palliative options and other ways to make life more comfortable and enjoyable. Consider VSED only after all other options are exhausted.
  • Call Compassion & Choices End-of-Life Consultation Service for detailed information, consultation and emotional support throughout the process.
  • Visit a mental-health professional to check for treatable depression and follow any recommended treatment plan. If depression is not a factor, a clean bill of mental health will reassure medical professionals and family. This step can prevent an uneducated or unsympathetic doctor from labeling an individual “suicidal” and ordering a psychiatric lock-up.
  • Bring loved ones in on the decision. When they offer their support, approach doctors and other healthcare professionals together.
  • Arrange for the best hospice or palliative services available. The most common difficulty is dry mouth, and this responds to treatment.

Even the best-laid plans can go awry. Co-chairing this campaign is Neil Rudolph, whose parents, Armond and Dorothy, stopped eating and drinking together and died peacefully early this year. Officials at The Village at Alameda assisted-living facility, where Armond and Dorothy made their home, learned of their plans and erected obstacles. When the couple demonstrated they were rational and overcame those obstacles, the facility served them a 24-hour eviction notice.

We are appalled that an assisted-living facility could kick a couple out of their home for simply planning to die there. So we drafted a sample contract rider to use with a lease contract if prospective residents want to safeguard their right to live in their new home through the time of their death.

Finally, Compassion & Choices is so dedicated to making VSED available to anyone making a rational, thoughtful and well-considered decision that we commit to the following:

  • We will will offer advocacy and legal assistance to help any individual encountering obstacles in their rational, well-considered plan to stop eating and drinking to achieve a peaceful death.
  • We will defend any healthcare provider facing sanction due to their medical and palliative support for a patient making a rational, well-considered decision to stop eating and drinking to achieve a peaceful death.
  • We will provide these advocacy and legal services without charge as part of our mission to improve care and expand options at the end of life.

In honor of Mrs. Eddy, Dorothy and Armond Rudolph, and all the people of courage and resolve who pioneered VSED, we dedicate ourselves to making this option generally known and universally available, and thus preventing unnecessary and unwanted suffering.

Signs of Hope in Western States

2:52 pm in Uncategorized by BarbaraCoombsLee

Historically, end-of-life choice has suffered at the hands of politicians. The people’s simple yearning for freedom and control at the end of life has been no match for the heavy-handed political power of long-established religious and medical lobbying institutions. In statehouse after statehouse aid in dying fell to Catholic bishops’ threats of shunning and excommunication, and the American Medical Association’s power to grant and withhold political favors.

Even the Oregon legislature defied the popular will in 1997 and put a repeal of the voter-approved Death with Dignity Act on the ballot. Voters reaffirmed the law 60/40% that November and Oregon’s politicians have refrained from tampering with it ever since.

Now lawmakers in other states seem to be getting the same message: The people want and deserve something to say about how they might meet an imminent, inevitable death from terminal illness. This legislative season has seen the tide shift.

In Washington State SB 5378, attacking the state’s Death with Dignity Act (DWDA), failed to pass out of committee. Politicians seem to lack interest in challenging the will of nearly 60% of the voters, so the bill was never scheduled for a hearing and never made it out of the gate to begin the long legislative process.

SB 5378 would have repealed a crucial portion of the DWDA by labeling deaths under it as “suicide.” In fact, the bill was a thinly veiled attempt to identify people who used the DWDA and expose participating physicians. It would have made it possible for anti-choice extremists to intimidate physicians and harass grieving families and would have set the stage for hostile demonstrations at burials and memorial services, and placards and pickets at physician offices. Good riddance to that bad bill.

Montana senators also decided not to mess with that state’s court-sanctioned aid in dying. The senate judiciary committee considered three bills. One would have overturned the Montana Supreme Court decision. One would have undermined its ruling and a third would have strengthened the ruling and gone further to protect physicians. Senators of both parties heard from thousands of constituents that government should stay out of the patient-physician relationship and private end-of-life decisions.

Read the rest of this entry →

Five States Give Patients Choice

2:34 pm in Uncategorized by BarbaraCoombsLee

“There’s nothing more we can do.” For too long, for too many, medical professionals have used these words when they believe they cannot cure their patients. Facing, as each of us must, the nearness of death, terminally ill patients too often speak of abandonment by their doctors. Trained to cure, most doctors remain untrained in caring for those they cannot cure. For decades, when patients sought support and information and found their caregivers uncomfortable with their quest, Compassion & Choices has stepped into the breach.

It is unacceptable to abandon dying patients to their agony. Compassion & Choices’ End-of-Life Consultation Service is, thousands of times each year, the non-judgmental friend who listens, gives counsel and information, and never abandons patients or their families. In my experience at the bedside, I learned that merely having a conversation with someone about anticipatory suffering, how that might be managed or might be escaped, often transforms their attitude toward life and their remaining time in the material world. Time and time again, we see spirits lifted. People reengage with life. The family calls us and says, "You won’t believe the change in Dad. He slept through the night. He ate breakfast. He told a joke. For whatever time is left, we have Dad back because Dad feels like a person again. He feels as though he has regained his ability to chart his own course."

But as I have said our mission is not only to provide service to the few we can reach directly. We seek to transform the practice of medicine to insure a future where provider do not abandon their patients.

Now, thirty years after one of predecessor organizations was founded, we are beginning to see signs of that transformation. Today, five states have substantial legal protections for patients facing the end of life.

California.

Two years ago, Governor Arnold Schwarzenegger signed the California Right-to-Know Act. We championed this law to address a major concern for terminally ill patients and their families, who often face the most important decision of their lives — how to live their final days — without understanding their legal rights and medical options. When a patient diagnosed with a terminal illness asks a physician, “What are my choices?” the Right to Know Act instructs the doctor to answer the question. Knowledge empowers patients and gives them comfort.

New York.

Last month, New York followed with “Right to Know” legislation, even stronger than the law in California, on which it was modelled. Unlike in California, the New York Palliative Care Information Act places responsibility to start the conversation on the doctor or other health care provider. This is a huge victory for patient-centered care, and will protect patients who are reluctant to pose difficult questions to their doctors. Beyond New York’s own large population, the medical schools and hospitals of New York are also the training ground for much of the nation’s doctors.

Washington and Oregon.

The citizens of these states passed initiatives that made physician aid in dying an accepted, legal part of end-of-life care. The question so many want to ask when they learn they are terminally ill is, “If it gets too hard for me to bear, is there something I can do to escape?” In both these states, terminally ill, mentally competent adults know they can ask their doctor for a prescription for medication they can, if they choose, ingest to achieve a peaceful death. Hospice workers in Oregon testify after twelve years’ experience with the Death with Dignity law, while few actually consume life-ending medication, the quality of conversations between physicians, patients and families has greatly improved. Under the law, Oregon has continued to be exemplary in its access to hospice.

Montana.

On December 31st, 2009, the Montana Supreme Court ruled terminally ill Montanans have the right to choose aid in dying under state law. Compassion & Choices brought this case, continues to fight against lawmakers who would overturn it and is working to make sure every Montana doctor, nurse, social worker and citizen understands this newly-affirmed choice.

Five states, as diverse as they are far-flung, have taken steps to ensure their people will not feel abandoned and disempowered at the end of life. Five states where patients receive the power of information, choice and autonomy. Medicine is changing, as these laws give dying patients the ability to steer their own course. These five states provide a far better chance for “Dad to feel like a person again,” and for whatever time they have together, the family has Dad back.