Compassion & Choices of Oregon

By Peter M. Patricelli M.D.
March 2012 in Of Interest, monthly publication from the Lane County Medical Society

DOWNLOAD – this essay for printing.

The Oregon Death with Dignity Act (DWDA), the first in the nation, was finally implemented in 1998 after being passed, twice, in general elections and surviving a Supreme Court review. The law allows dying patients, screened by two physicians and in a time-measured process, to obtain a fatal dose of medication to be self- administered. Since that time over 900 Oregonians have utilized the law at least to the point of a prescription being written and the decision placed solely within their control. All of those patients, regardless of whether they eventually took the medication, lived out their final days knowing that they had day-to-day control of the decision whether to endure and continue or to end further suffering.

The DWDA and physician assistance-in-dying (AID) in general represents, to it’s proponents, recognition of a significant spiritual diversity in approach to the final mechanics of dying NOT addressed by laws based on either dominant religious theology, cultural confusion or denial of the dying process itself, or the momentum of medical treatment or research.

Since passage and implementation of the Act, the challenge presented by many patient’s dissatisfaction with the management of the terminal process has challenged the physician, nursing, and hospice communities, not to mention society as a whole, to re-examine procedures and re-set standards for end-of-life care…to the benefit of all.

In the past four years, a court decision in Montana determined that state law permits a physician, within the boundaries of standard practice, to write a final prescription for a terminal patient. Hawaii appears to have a similar legal framework. Washington passed and implemented a clone of the Oregon law. Hawaii appears to have similar legal framework. Massachusetts has the law on the ballot for November. Canada as a whole is awaiting a national court decision, and the province of British Columbia is considering it’s own decision. In 2011 a national U.K. commission, after visiting Oregon and reviewing Oregon’s experience, has recommended implementation of a Death With Dignity Law in England.

The Oregon DWDA was passed as a complex, double-safety-redundant process to address objections and predictions of doom by it’s opponents. The mechanical demands of the law represent an unfamiliar hurdle for the sympathetic physician and an enormous hurdle for a dying, emotionally distressed patient. The emotional hurdle for the first time sympathetic physician is not to be underestimated. As a result, only those patients who are educated enough and driven enough to push through the barriers, and have enough “time”, actually get to the final prescription. That currently amounts to .2% of the yearly deaths in Oregon. 83% of those who take the medication have cancer and 11% Amyotrophic Lateral Sclerosis.

Compassion and Choices of Oregon (CCO) is a Portland based, largely volunteer group composed of the doctors, lawyers and activists who proposed and shepherded the law through passage. From it’s inception CCO recognized the need for an additional level of support for patients and physicians to implement a new, controversial, complex and unfamiliar process. CCO’s goal is to support terminal patients making non-traditional choices and to make the AID choice, among others, available to dying patients who do or would request it. CCO’s working focus is to promote a consistent application of the law for the best outcome, thus to protect the law from criticism arising from complications that might occur from an inconsistent, unfamiliar process.

CCO’s role has been so central and needed that CCO has played a major role in over 80% of all patients attempting the process. CCO acts as an initial contact and information point for patients, and as a referral, information, and support source for physicians (through primarily physician-to-physician contact). CCO will attempt, if a patient’s own physicians will not participate, to contact and arrange a referral to a sympathetic physician and a consulting physician. CCO will inform and support a physician as to the steps necessary to legally write and deliver the prescription. CCO will recommend to both physician and patient the steps of medication and dose that have proven most effective. CCO will identify the pharmacy willing to provide the medication and contact the pharmacy as to availability and price, an ever-moving target. CCO arranges for trained volunteers to provide continuous support to the patient and family, working always with hospice care and the physician, until death by either mechanism. CCO will provide, at patient and family request, a volunteer to be present to assist in the final steps of mixing the medication, confirming the patient’s final competency and desire to take the medication, the patient’s self-completed act of taking the medication, and support the family in dealing with the after effects, calling the mortuary, etc.

CCO provides all these services at no charge.

In 13 years the numbers of Oregon patients self-identifying and seeking the AID process has averaged between 200-250 per year, and the number actually taking the medication between 45 and 60, on the whole, growing slowly. Those who get the prescription but do not take it consistently express comfort and relief at having an option should severely distressing conditions develop. As palliative treatments and hospice care improves, not the least because of the existence of AID, the percentage of patients taking the medication may decrease….and everyone is satisfied with that. The point is an individualized, patient-directed terminal process as opposed to a legally imposed, culturally and religiously based mandate.

But those numbers only represent those patients most determined to access this option AND given enough time by their illness to negotiate the complex process. Each year a number almost equal to those who took the medication are overtaken by their disease and die or lose the capacity for self-medication while awaiting referral to a willing physician or in the short waiting periods of the law itself. An unknown number may inquire of their treating physicians and, if they receive a negative response and/or no offer of referral, become discouraged and push no further. Their death then conforms, not to their own, but to their physician’s comfort level.

The DWDA process could be completed in 15-17 days. Unfortunately, lacking personal physician involvement, the time frame of finding and getting an appointment with, sequentially, a willing physician AND consultant, and satisfying waiting times actually averages 1-2 months. Those are months of uncertainty and anxiety. The relief comes only when the prescription is finalized and the patient is put back in control.

The message is….discuss ALL options open to the patient at least once and early. And be clear, early, whether you would participate or refer them if that was their choice. And be clear for yourself that, if asked, you could proceed with the considerable support and knowledge base of CCO medical directors behind you and, you could choose to act as either prescribing or consulting physician. The unfortunate time realities dictate that primary physician/specialist willingness, in conjunction with the timing of the request and speed of the disease process, most commonly dictates whether those patients succeed in their goal of choice or suffer an externally imposed process.

From the standpoint of maximizing the availability of the AID option, Eugene and Lane County, despite a highly educated, liberal, and quite supportive population, remains a problem area.

Eugene Area Compassion and Choices of Oregon

The Eugene team of Compassion and Choices of Oregon has responsibility for significantly more than just Lane County. The Eugene team covers patients from Salem to Roseburg, the Cascades to the coast and consists of 13 volunteer members which include 2 retired physicians (myself and Alan Cohn MD), 3 nurses, and the remainder trained personnel, most with a professional background. All initial contact from patients and doctors is encouraged to go through the Portland CCO office and are secondarily referred here.

Each patient is assigned to a team of two volunteers who make telephone contact and schedule the first of, usually, many home visits. The Eugene team encourages, and works closely with Hospice. The most important immediate factor is whether the patient has a sympathetic physician willing to participate as primary or consulting physician.

The Eugene team meets monthly at which time new cases are presented and each team reviews the status and pending issues of their case load. When necessary the team reaches out to known sympathetic physicians for primary or consulting participation. Technical support on issues of medication, timing of doses, and possible interaction with pre-existing medications or treatments is available from both the local and Portland CCO doctors.

The degree of contact by the CCO team can range from a monthly phone call to weekly visits, depending on each case and family situation. In most cases the CCO volunteers become an intimate support element working with both hospice, the family, and the patient to ensure their final wishes and comfort issues are met. Team members are available to respond to any changes in the patient’s condition that might precipitate a decision to take the medication. CCO always attempts, if requested, to provide a team member to assist and support when a patient makes a decision to hasten their dying process.

Conclusion

In the years following implementation until my retirement I was personally involved in 10% of all the cases in Oregon. Locally, Glenn Gordon M.D. and I covered the majority of Eugene and Lane County cases and no request for my participation was ever refused. I found CCO so integral and important for both the patient, family, and myself that I insisted every patient at least contact CCO hoping they would utilize the comprehensive, free service. I am currently on the Advisory board of CCO and a member of the Eugene Area team.

In 2011 three Lane County patients who otherwise qualified never got prescriptions for lack of ability to quickly find doctors. This issue would be solved if sympathetic but currently non-participating doctors, realizing the degree of support available to them, would identify themselves to CCO. A larger pool of participating physicians would spread the load. I could easily envision a formalized group within LCMS that might meet regularly for support and problem solving and to lend support to other doctors contemplating the process for the first time.

It is beyond the scope of this article to present my experience, but a twice reprinted article in the award winning Medical Ethics issues of the Harvard Medicine Journals of 2000 and 2007 summarizes my early experience well – http://harvardmedicine.hms.harvard.edu/doctoring/medical%20ethics/whosedeath.php

There is evidence that Oregon patients who utilize AID mirror the way physicians themselves respond to terminal illness: http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/

And that the general public, like doctors themselves, is much more interested and willing to limit or reject palliative treatment based on an extend-life-at-all-cost cultural and religious ethic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2596594/

Contact information

Compassion and Choices of Oregon – Portland
PO Box 6404, Portland, OR 97228
phone: 503-525-1956
email: contact@compassionoforegon.org

For more information on the legal, ethical and professional aspects of our aid in dying law look at the website: compassionoforegon.org. Select “Services” from the top of the page and click on “For Physicians”.

Please join Compassion & Choices of Oregon and its Board for a special screening of the Sundance Grand Jury Prize winning documentary ‘How To Die in Oregon‘ at the Northwest Film Center.

We hope to see you there to celebrate and learn about the great work done by the volunteers of Compassion & Choices of Oregon.

When: Monday November 14th 8:30 PM
Where: Northwest Film Center – 1219 SW Park Avenue in Portland.
How: tickets are $9 and can be purchased now ONLINE .
FYI: There will be some tickets at the door – but every screening of this film in Oregon SOLD OUT.

CCO’s Annual Luncheon on October 25th was our biggest annual event to date, with over 320 attendees! The preliminary fundraising report is that the event brought in over $54,000 at the lunch and another $10,000 in pledges, significantly more than last year.

CCO honored Volunteer of the Year Esther Bell with a standing ovation. Esther has been a Client Support volunteer with CCO since 2004 and has helped over 100 clients in that time. Look for some words from her in our printed newsletter this November!

Lynn Frank spoke eloquently about his mother’s experience using the Death with Dignity Law as a client of Compassion & Choices of Oregon. His story mixed humor and emotion as our client’s stories often do, and highlighted how important CCO’s work can be in supporting people to make their own choices at the end of life.

State Attorney General John Kroger spoke about the law on both a personal and professional level. He shared stories of how his grandmother’s death in a hospital didn’t reflect her vibrant life. He said, “We need to give people the opportunity to end their lives with spirit and control and dignity, my grandmother didn’t have the opportunity to make that choice,” and stated his confidence that the Attorney General’s office will continue to support the law that makes that choices possible. You can read more of John Kroger’s speech at the Lund Report.

Thank you to everyone who attended–it was wonderful to see so many of our long-time supporters there! And an extra big thank you to our Table Captains, who went above and beyond to bring new faces.

Oregon Attorney General John Kroger will be the keynote speaker at the 16th Annual Compassion & Choices of Oregon Lunch. We expect over 400 attendees this year, making it the largest event in the United States Death with Dignity movement.

John has devoted his entire life to public service as a United States Marine, federal prosecutor, public policy expert, and teacher. John was elected in November 2008 after winning the nominations of both the Democratic and Republican parties. He won in every county in the state. John’s top priority as Attorney General is fighting crime and protecting crime victims. As Attorney General he created Oregon’s first Environmental Crimes Enforcement Unit and our state’s Mortgage Fraud Task Force.

As a federal criminal prosecutor, John won major cases against mafia killers, drug kingpins and corrupt government officials. He helped prosecute crooked Enron executives and served on the emergency response team to the 9/11 terrorist attack on the World Trade Center. In recognition of his work, John won awards and commendations from the FBI, the Drug Enforcement Administration,and the State Department. In 1999, John received the Director’s Award for Outstanding Performance as an Assistant United States Attorney from Attorney General Janet Reno for convicting two mafia captains who committed multiple murders. John wrote about his experiences as a prosecutor in his book Convictions, which won the Oregon Book Award in 2009.

CIRCLE THIS DATE. Our Annual Fundraising Lunch is October 25th at the Multnomah Athletic Club from 11:45 to 1:00.

Barbara Coombs Lee, President of the national organization Compassion & Choices will also speak. Our volunteer of the year will be announced.

The Annual Fundraising Lunch is foremost opportunity to invite friends and important members of the community to hear about the important work of Compassion & Choices of Oregon and ask for their financial support.

Want to help? Be a Table Captain!

Table Captains invite ten friends and colleagues to join them for the Annual Fundraising Lunch, to showcase Compassion & Choices of Oregon. Some supporters work together to be co-Captains and share a table. This event is a great way to have fun with friends while providing information at the same time.

Contact Kristin Barber at Kristin@compassionoforegon.org or at 503-525-1956 to be a CCO Table Captain.

By Harris Meyer, July 8, 2011 – Published at Crosscut.com

Meeting in Bellevue, the bishops take a firmer line on physician-assisted aid-in-dying laws and make allegations about abuses that are not supported by the experience in Oregon and Washington.

The U.S. Conference of Catholic Bishops’ policy on physician-assisted suicide, approved at their national meeting in Bellevue last month , is the latest move by Roman Catholic leaders to intervene in Americans’ personal health care decisions.

The eight-page policy, which the bishops passed 191-1 at their annual spring meeting, is full of inaccurate and misleading statements about the Death with Dignity laws in Washington and Oregon and the policy positions of the laws’ supporters. It ignores 14 years of experience in Oregon and two years in Washington. The head of Compassion & Choices, the main group supporting those laws, criticized the bishops’ policy statement as “full of reckless, unsubstantiated accusations.”

The bishops’ statement warns that the voter-approved Death with Dignity laws — which allow terminally ill, mentally competent adult patients to receive medications from their doctor to end their lives — essentially legalize murder. And it makes the stunning claim that U.S. leaders of the Death with Dignity movement in effect advocate ending the lives of people who have not sought help in dying.

“A society that devalues some people’s lives, by hastening and facilitating their deaths, will ultimately lose respect for their other rights and freedoms,” the bishops said. “Taking life in the name of compassion also invites a slippery slope toward ending the lives of people with non-terminal conditions.”

The new policy, “To Live Each Day with Dignity,” is the U.S. church’s first official policy on aid-in-dying, which also is legal in Montana under a 2009 Montana Supreme Court ruling. The policy follows increasingly aggressive efforts by the bishops to require Catholic health care facilities and providers to insert and maintain feeding and hydration tubes in terminally ill patients — even those who have written advance directives stating they don’t want them.

The bishops also have cracked down on Catholic hospitals that performed tube-tying operations for women who are not going to have more babies. Last year, a bishop expelled St. Charles Medical Center in Bend, Ore., a century-old hospital founded by nuns, from his diocese for refusing to stop performing tubal ligations.

These policies matter because the bishops oversee more than 600 Catholic hospitals and hundreds of Catholic nursing homes, assisted living centers, and hospices. Please click here to continue reading this important story.

SEATTLE, June 15, 2011 – Compassion & Choices, the nation’s largest nonprofit organization advocating for end-of-life care and choice, joined by a Washington physician with ALS, a Catholic widower of a dying patient who used Washington’s Death With Dignity Act, clergy and doctors today responded to a new attack on patients’ rights by the United States Conference of Catholic Bishops (USCCB).

The USCCB is meeting in Seattle to strengthen their opposition to end-of-life choice. The Roman Catholic bishops stated they are reacting to advances in patients’ rights made in Washington and Montana by groups supporting “compassion” and “choices.” The Roman Catholic bishops hope to retard growing access to aid in dying as part of the standard of care for end-of-life medical treatment.

The USCCB release distorts the values of Compassion & Choices’ and misrepresents our work, claiming it “undermines patients’ freedom by putting pressure on them.” The Roman Catholic bishops’ opposition contradicts the support of most Catholics and Americans for patients’ rights at the end of life. Majorities of people of every faith and belief – including Roman Catholics – believe in permitting terminally ill patients to make their own choices about the final days of a terminal disease.

 

Compassion & Choices President Barbara Coombs Lee said, “We welcome the Catholic bishops’ clear statement that opposition to aid in dying is a matter of religious belief. While we respect religious instruction to those of the Catholic faith, we find it unacceptable to impose the teachings of one religion on everyone in a pluralistic society. We believe end-of-life care should follow the patient’s values and beliefs, and good medical practice, but not be restricted against the patient’s will by Catholic Church doctrine.”

Dr. Richard Wesley, a retired Seattle pulmonologist and Intensive Care Specialist who is terminally ill with ALS, told a news conference, “I want to live as long as I possibly can, providing I still have quality of life. At the same time, when life is no longer enjoyable, I want to go quickly and peacefully. As a physician, I have witnessed many slow painful deaths. I do not want to endure a slow painful death. I don’t know if I will take the life-ending medication, but I do know that it gives me peace of mind to have some choice and control at the end of my life. Providing aid and comfort in dying is part of good medical care for terminal patients at the end of their lives. It is a physician’s duties to alleviate pain, address our patients’ anxieties and worries, and to try to help them have the peaceful death all patients want. Whether to ask my physician for aid and comfort in dying, or to use that medication to avoid a painful death, is my decision. It’s my life. It is my death and it should be my choice.”

“Rather than undermining the value of patients’ lives I believe that a legal option to choose aid in dying enhances their dignity as moral agents,” said Rev. Pat Simpson, Seattle district superintendent of the Pacific Northwest Conference of the United Methodist Church. “Our law in Washington provides freedom for human beings of every faith – or of no faith – to make choices about dying according to their own values and beliefs. As a Christian and as a religious leader I am profoundly grateful to serve in such a context.”

Anthony Rizzo, of Puyallup, Washington, whose wife, Joyce, used the Washington Death With Dignity Act to aid in her dying from lung cancer, said, “I am part of the majority of Roman Catholics who voted for the Death With Dignity Act and who supports patient choice at the end of life. Joyce was suffering terribly, in excruciating pain. She had tried every treatment and therapy, and had part of her lung removed. The fight to overcome her fatal disease had been a three-year ordeal for Joyce, but she hung in there until there was no hope. Knowing she was facing a painful and difficult death, it was a wonderful thing and a great comfort for Joyce to have the choice of aid in her dying. Joyce did finally attain the peaceful, dignified death she desired because she could use the Death With Dignity Act. I shudder to think of the pain she would have experienced without such end-of-life choices, as the Catholic bishops would deny her.”

“Our experience has been that terminally-ill patients and their families are benefiting from aid in dying,” said Dr. Tom Preston, Medical Director of Compassion & Choices 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 his or her life, all can say their goodbyes. As studies of the Oregon experience have found, families are more at peace with the loved-ones’ deaths than families of other patients.”

Multiple studies have documented broad improvements in end-of-life care where aid in dying is legal. When aid in dying is available it raises the floor for all end-of-life care, benefiting all terminally ill patients. Physicians prescribe more strong pain medications, receive more Continuing Education in pain and symptom management, and refer more often and earlier to hospice. Communication between patients and physicians is more open and end-of-life options are discussed more fully and frequently. For the relatively small number of dying patients who find themselves trapped in a dying process they find unbearable, aid in dying offers a compassionate choice for a peaceful death.

SIGN THE LETTER – I Stand For Patient Wishes Over Religious Dogma
READ – Debate on doctor-assisted suicide heating up again, Denver Post
READ – Catholic Church Amps Up Its Fight Against Aid in Dying, The Nation
READ – Bishops approve first major statement on physician-assisted suicide, Catholic News Service
READ – National meeting of Catholic bishops opens in Bellevue, draws critics, Seattle Times
READ – ‘To Live Each Day with Dignity: A Statement on Physician Assisted Suicide’, United States Conference of Catholic Bishops

Jack Kervorkian died in a Michigan Hospital on June 3, 2011. The following is response from around Oregon.

Eugene Register Guard – editorial, ‘Dr. Death’s’ dark legacy – Kevorkian served his cause poorly. With his knack for self-promotion and his flair for feeding the public’s appetite for the macabre, Jack Kevorkian made his gaunt features the face of physician-assisted suicide for a quarter century. He served his cause poorly, as is shown by the fact that only three states, including Oregon, allow physician-assisted suicide in any form. Kevorkian died of natural causes last Friday at age 83, and now the nation can begin a conversation about the end of life without the funhouse-mirror distortions introduced by “Dr. Death’s” presence. READ MORE.

The Oregonian – editorial, Jack Kevorkian, Oregon’s dark shadow. Leaders of the 1997 Oregon initiative to legalize physician-assisted suicide never let Dr. Jack Kevorkian near this state. As the creepy face of assisted suicide, Kevorkian was as toxic as the poison that dripped from his homemade death machine. But like it or not, Oregon history is entwined with the audacious doctor who died the old-fashioned way Friday at a Detroit-area hospital, succumbing to pulmonary thrombosis, a blood clot. READ MORE.

Guest Column by Jason Renaud of Compassion & Choices of Oregon, Janet Adkins, Jack Kevorkian and the end of an era. Kevorkian’s death marks the end of an era. Led by the example of Oregonians, physician aid in dying is becoming accepted as a component of standard care for persons with terminal illness. Three Western states — Oregon, Washington and Montana — have affirmed that the public policy of their states permits this choice. READ MORE.

Daily Astorian – editorial, Kevorkian’s deaths not always driven by disease. The case for assisted suicide seems to depend on human sympathy – on the impulse toward mercy, the desire to ease what seems like pointless pain and suffering. Why shouldn’t the terminally ill meet death on their own terms, rather than at the end of prolonged agonies? Why shouldn’t the dying depart this earth with dignity, instead of enduring the inexorable stripping away of their physical and mental faculties? READ MORE.

Plan to attend the Compassion & Choices of Oregon Memorial Day Concert with Michael Allen Harrison at the Old Church in downtown Portland, May 30 at 5 PM, 1422 S.W. 11th Avenue.

Michael Allen Harrison delivers music to the heart. His classical contemporary style carves a distinct niche of timeless music that has connected with so many during his two and a half decade career.

Tickets are $26 and available at the door.

All tickets include an Oregon wine reception by the Montinore Estate.

Need directions to The Old Church? See a map!

Thanks to our Memorial Day Concert sponsors – Rhino Printing, Watershed Communications, and the Montinore Estate.

From The Oregonian, April 20, 2011

End-of-life quality among people who received lethal prescriptions under Oregon’s Death With Dignity Act is comparable and perhaps better in some ways than people dying conventionally, a survey of family members suggests.

Researchers asked family members to rate the dying experience of their loved one using a 33-item questionnaire. They compared the experience of 52 Oregonians who received a lethal prescription, 34 who requested but did not receive one, and 63 who never sought one.

Ratings were no different on most questions. But those who obtained a lethal prescription were more likely to discuss end-of-life wishes — and more likely to say goodbye. They appeared to experience less trouble with feeding themselves, incontinence and exhaustion. They laughed and smiled more, family members said.

Study author Linda Ganzini, a professor of psychiatry at Oregon Health & Science University, says the assisted death option appears to be fulfilling a preference to maintain control and avoid a period of declining function before death. Ganzini has spent years tracking the impact of the 1997 legalization of lethal prescriptions for the terminally ill in Oregon. Opponents and supporters of the law have at various times seized on Ganzini ‘s findings to bolster their causes.

Ganzini talked with The Oregonian about her latest study, appearing in the Journal of Palliative Medicine. (This article is not available online.)

Q: Why hasn’t anyone before now compared end-of-life quality among people using lethal prescriptions and those not seeking that option? Is it difficult to find people willing to participate?

A: There has been concern that people who say they want to understand and study things actually have an agenda. That has made some people wary of participating in studies, and some organizations wary of asking families to participate in research. My studies have annoyed both sides of the debate.

Q: How does your latest study square with previous work?

A: Originally in the debate about physician aid-in-dying, there was the contention that people who wanted this option did so because of intolerable pain and suffering. We’ve found that it’s the worry about suffering that is important. People seeking this option have a firm conviction that they want to cut short their life before they experience suffering, not because they are suffering. In a previous study, people reported a very low symptom burden at the time they made the request. But they had a lot of worry about future pain and fatigue. Our latest study supports that people who request these prescriptions use them to avoid suffering in the future.

Q: You found most of your Death with Dignity patients through an advocacy group, Compassion & Choices of Oregon, which helps patients seeking lethal prescriptions. Could that skew your findings?

A: Most of the referrals came from Compassion & Choices of Oregon. Only a little over one-third of those invited to participate in the study agreed to participate. That leaves open the possibility that family members who felt more strongly about this being a good option were more likely to participate. It is a clear limitation. In the comparison group, family members knew this was a study about assisted suicide. Those with negative feelings were less likely to agree to participate. Another concern we had about the control group was that people who experienced the death of a loved one that didn’t go well may be less likely to talk about it.

Q: What are the practical implications of what you’ve found?

A: These studies shed light on a larger group of people who have different ideas about what they want at the end of life. At the beginning of the hospice movement, there were somewhat rigid ideas about what people needed. The mantra included the ideal that no one should die alone. In fact, there is a small group of people who want to die alone. It included the need for family reconciliation. There is a group of people who do not want family reconciliation. It included the ideal that no one should die in pain. There is a group who would rather have pain than have confused thinking from opiates. End-of-life care has to expand to incorporate the huge diversity in people’s values. We need to be listening for that, rather than imposing our own ideas.