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Dignity at the End of Life

Posted By November 2, 2012 | 11:56 am | Featured Article #1
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See below for

• Links to End-of-Life Resources

• Accepting assisted suicide creates climate for all suicide

• Oregon doctor finds support for compassionate care

• Palliative care fits Catholic health mission, but too few aware of it

• Different paths bring doctors, patients to palliative care, hospice

Protecting yourself through the end of life

By Gina Curini
Special to The CFP

When faced with a situation in which life-sustaining means are necessary to assist a patient, how can we know what is or is not appropriate, acceptable, required or optional? The answers come case by case, as circumstances are too varied and nuanced to make blanket pronouncements.
In his presentation, “Care and Treatment Decisions for Compromised Patients or Patients at the End of Life,” Father Tadeusz Pacholczyk, Ph.D., discussed how to employ medical technology ethically. Father Pacholczyk is the director of education for the National Catholic Bioethics Center. He was one of the speakers at the “To Live Each Day with Dignity” conference held at Assumption College, sponsored by the diocesan Respect Life Office and the Worcester Guild of the Catholic Medical Association.
As human beings, created by God, we are not owners of our own lives, but rather stewards of the gift of our lives, Father Pacholczyk said paraphrasing the introduction to Part Five of the Ethical and Religious Directives for Catholic Health Care Services of the United States Conference of Catholic Bishops. In other words, we owe God a life well-lived, he said. To live well imposes a duty that we must use our reason to make prudential judgments, especially in regard to technology and life-sustaining measures, he said. Making informed decisions is the only way of achieving peace of mind when we are faced with the fears either of becoming totally dependent on extreme measures to sustain life, or of not having adequate care.
Each situation has its own difficulties, nuances and circumstances to understand, he noted. To assist in making these decisions, the National Catholic Bioethics Center has published “A Catholic Guide to End-of-Life Decisions.” Additionally, the NCBC offers access to an on-call ethicist who will help look at pertinent information needed to make an informed decision. (The telephone number is 215-877-2660.)  A few of the considerations to be weighed include: the success rate of a treatment or procedure, risks and side effects, the individual’s physical and moral resources, expense, burdens on others, and access to treatment.
Another important issue that Father Pacholczyk raised was the need for a good advance medical directive and the naming of a health care proxy or surrogate. In a situation where you, as the patient, cannot make your desires for treatment known, it’s imperative to safeguard your rights, he warned.
Today there are such options as a generic living will, a “Five Wishes” document or Medical Orders for Life Sustaining Treatments (MOLST) here in Massachusetts.  All three have severe limitations, he explained.
“A living will is really sort of like writing a blank check,” said Father Pacholczyk, “because you really don’t have this ability to prognosticate or know what’s going to happen to you.”
The problem with the “Five Wishes” is that it over-simplifies the end-of-life planning process and it uses broad terms lacking nuances that often arise; moreover, it is not always applicable, he said.
MOLST is extremely dangerous in that it gives the doctor all the power over treatment options, he said.  It omits and supersedes a specific proxy and allows for the very opposite of “informed consent.”
Father Pacholczyk suggested using both an advance medical directive and two surrogates or proxies.
In regards to the advance medical directive, Father Pacholczyk said, “When you do your end-of-life planning in this written form, you have the power of the pen. You can write things in and cross things out that explain your wishes.”
Choosing a proxy or surrogate is an important decision because you will be entrusting your very being to another person, he said.  As Catholics, the surrogate we choose should know how to determine when to stop life-staining measures. The surrogate should also know that if we are facing death, the illness must have progressed to the stage of “actively dying” before removing or denying treatment.
Often a surrogate is a person close to the patient and who will be strong enough to allow reason to take precedence over emotion too.  As Father Pacholczyk stated, “Emotion should never be a substitute for sound moral thinking.”
Father Pacholczyk called the current debate in Massachusetts over the Nov. 6 ballot question that seeks to legalize prescribing medication to end life, a “powerfully emotional topic.” On the so-called Death with Dignity Act, Catholic ethical and religious health care directives are very clear: “Suicide and euthanasia are never morally acceptable options.”
Father Pacholczyk quoted Dr. Edmund Pellegrino, head of President Bush’s Council on Bioethics, on the issue.
“Assisted-suicide and euthanasia distort compassion. Compassion for the suffering and the sick is a normal human response and every society should foster that. But compassion can be distorted, especially in an age which Malcolm Muggeridge, an admirer of Sister Teresa (Blessed Mother Teresa), called the ‘age of the humane holocaust built in the name of compassion.’ Much harm has been perpetrated in the name of compassion. True compassion cannot mean elimination of the sufferer to relieve suffering. It is not compassion but a species of moral abandonment to believe a patient is not worthwhile enough to be preserved,” Dr. Pellegrino said.
Father Pacholczyk went on to emphasize that euthanasia (or “assisted suicide”) is actually a form of abandonment of those who are suffering. He said that we need to raise the quality of life for the suffering, not “give up” and end their life.
Suffering and dying is an invitation to journey with the person, he reminded the audience. The word compassion, he noted, comes from the Latin “cum” and “patio,” “with” and “suffering.”  We are called to suffer with the person, to console them.  By joining their solitude, the solitude ceases to exist; they are no longer alone.
The growth family and friends undergo through the dying process forms a community that is part of God’s plan for our life, which is actually only the beginning of a life with him.
“Dying well is such a grace and a stepping stone to a new life,” Father Pacholczyk said.

Accepting assisted suicide creates climate for all suicide

By Tanya Connor

Physician-assisted suicide doesn’t promote free choices or compassion, according to a speaker at Saturday’s conference at Assumption College.
Richard M. Doerflinger illustrated the latter point with this story of a debate he had on Fox News with Geoffrey Fieger, Dr. Jack Kevorkian’s attorney.
Dr. Kevorkian was known for helping patients die. Mr. Doerflinger is associate director of the Secretariat for Pro-Life Activities of United States Conference of Catholic Bishops.
“‘The difference between us is, I go in and I see somebody in a hospital bed with bed sores, lying in her own feces, gasping for breath and in pain and I say, ‘Why do we have to be so cruel as to let this continue?’” Mr. Doerflinger recalled the attorney telling him.
He said he replied, “No, the difference between us is, what I would say if I saw that was: ‘Clean this woman up. Fire the doctor. Get her in a better hospital. Where’s the nurse?’ And you want to kill the victim.”
Listeners applauded Mr. Doerflinger.
“Why does physician-assisted suicide not promote free choices?” Mr. Doerflinger asked. He gave reasons cited in the bishops’ “To Live Each Day with Dignity: A Statement on Assisted Suicide.”
He spoke of the role of depression and mental illness as forms of slavery.
“This is not about so much the patients’ choices,” he said. “It’s about the decision society makes. …
“Once you undermine the values of patients’ lives, it inevitably means undermining respect for their other rights.”
Nearly 95 percent of people who kill themselves have been shown to have a diagnosable psychiatric illness; most suffer from depression, which can be treated, Mr. Doerflinger said, citing Dr. Herbert Hendin’s book “Seduced by Death.”
With advanced illness and progressively impaired physical function, symptoms of severe depression rise to 77 percent, he said.    “We’re not giving people greater freedom generally to commit suicide,” he said of societal pressure. “We’re saying … there’s a class of people whose suicidal feelings should be prevented from being put into play, and there’s this other group whose suicidal feelings should be assisted and facilitated.”
“When you pass a law like that, you’re not just saying to those who have been champing at the bit to have assisted suicide … ‘OK, now we’ll let you have it,’” Mr. Doerflinger said. “You’re creating a climate for everybody who faces those situations in the future, many, many thousands of people who don’t have that idea now but who are now going to go into a medical environment in which it is seen as rational and acceptable to have those suicidal feelings when they get this kind of diagnosis.”
Mr. Doerflinger said it has been easy in the Netherlands to move from voluntary to involuntary euthanasia. Voluntary euthanasia was justified in the name of individual freedom, he said.
After doctors practice this for awhile and know what kinds of things lead patients to make choices, they develop their own ideas of who is a good candidate for euthanasia, he said.
He told of a doctor caring for a suffering nun who said, “I knew her religion wouldn’t let her ask for euthanasia, so I just gave it to her.”
“The pressures upon people with disabilities to choose to end their lives and the insidious appropriation by others of the right to make that choice for them are already way too common in our society,” Mr. Doerflinger said. “And this is a whole class of people … who have been living with prejudice.”
Physician-assisted suicide can undermine efforts to marshall the needed resources and the will to ensure humane and dignified care for the terminally ill and severely disabled, Mr. Doerflinger said, and illustrated with the following.
Patients complain of doctors passing them by once they are diagnosed as terminal, he said, and added that it’s a natural human reaction to avoid getting attached to those about to die. But this undermines patients’ need to have medical people be with them.
After Oregon’s physician-assisted suicide law took effect, the frequency of family reports of patients’ moderate to severe pain rose from 30.8 percent to 48 percent, he said.
And a 1994 study found 185 palliative care centers in the United Kingdom, where physician-assisted suicide was illegal, and three in the Netherlands, where it was legal.
“So the key question for Massachusetts is, ‘How does Question 2 … address these concerns?’” Mr. Doerflinger asked.
He responded by talking about the following problems.
It is difficult to determine when someone has six months left to live and that can change with treatment.
One witness to the patient’s request for suicide can be an heir and one can be chosen by the facility the patient is in.
The family need not be notified.
A psychiatric evaluation is optional, if the doctor decides the patient does not have impaired judgment.
Someone else can pick up the lethal drugs for the patient, and whoever is there can give him the drugs.
The doctor does not have to be present, but does all the reporting, and he is required to lie about the cause of death.

Oregon doctor finds support for compassionate care

By Tanya Connor

Michael Freeland sought to end his life.
Barbara Wagner was trying to save hers.
Both lived in Oregon, where physician-assisted suicide is legal.
William L. Toffler, a professor of family medicine at Oregon Health & Science University told their stories to people in Worcester Saturday. A medical doctor, he was one of the speakers at the “To Live Each Day with Dignity” conference held at Assumption College.
Seeking assisted suicide, Mr. Freeland mistakenly contacted Physicians for Compassionate Care, of which Dr. Toffler is co-founder and national director. He got more positive help there.
But Dr. Toffler said a doctor gave Mr. Freeland a prescription for an overdose, without addressing his pain or long history of depression. Once while he was hospitalized for depression and suicidal thoughts, police removed deadly weapons and ammunition from Mr. Freeland’s house, but not the deadly overdose. Because he had that life-ending medication, someone suggested that providing additional care when he went home from a mental hospital might be a moot point.
Because of the support he received from Physicians for Compassionate Care, Mr. Freeland decided against suicide, and died naturally after reconciling with his daughter, Dr. Toffler said.
By contrast, Ms. Wagner didn’t want to die, but was invited to consider suicide. Dr. Toffler showed a video of her story, part of which can be viewed on
Ms. Wagner said her doctor thought the chemotherapy drug Tarceva offered her hope. So she was shocked to get a letter from the Oregon Health Plan saying it could not approve this drug, but would pay for “comfort care,” including assisted suicide.
Dr. Toffler, also interviewed in the video, said the state had a financial incentive: the chemotherapy drugs cost $4,000 per month; assisted suicide drugs cost less than $100.
Asked if it was cheaper to pay for someone to die than to help them live, the chairman of the commission that sets policy for the Oregon Health Plan said, “That is not a question that we think about. We don’t think about investing our health care dollars in that way.” But he said if they invested thousands of dollars in “one person’s days to weeks,” they would be taking those dollars away from someone.        Dr. Toffler talked about other situations in which the Oregon Health Plan won’t cover treatment.
“This is no longer theoretical for me,” he said, adding that his wife failed five different chemotherapy treatments, which she would not have received under this proviso. But by “pushing the envelope” in seeking help, they may help others learn something. He used the example of billions of dollars spent for HIV research, saying that highly effective therapy has now been discovered.
Dr. Toffler raised questions for those seeking to legalize physician-assisted suicide here.
Why reserve it for those with only six months to live, if the aim is to eliminate suffering?
Why involve doctors and corrupt the medical profession, when veterinarians are already experts at putting animals to sleep? He told of a patient asking if the doctor who was not giving her hope was “one of the death doctors.” That question wouldn’t have been asked 20 years ago, he said.
Why give pills? Lethal injection is more efficient and is used to execute people, he said. Is physician-assisted suicide acceptable on death row?
Despite everything, Dr. Toffler said, “I really do have hope for the future.” He said God brings good even out of bad. He said he’s become a daily Mass attendant, having figured if he was more faithful he might help prevent assisted suicide in Oregon.
He didn’t, but he encouraged listeners to work to keep it out of Massachusetts. He said if each of them talked about the issue that day to five people they knew who might be “waffling,” and got them to commit to talk about it to five others, before the election hundreds of thousands of people would have been contacted.
“I really encourage you to use your talents,” he said.

End-of Life resources

“Ethical and Religious Directives for Catholic Health Care Services” and a statement on physician-assisted suicide, “To Live Each Day with Dignity” by the U.S. Conference of Catholic Bishops.
“A Catholic Guide to End-of-Life Decisions,” which includes an advance medical directive and a proxy designation form on the National Catholic Bioethics Center website.

For more information in Massachusetts Question 2
/ Physician-Assisted Suicide

Massachusetts residents with disabilities who oppose Question 2 on the 2012 state ballot, which would legalize assisted suicide.
Physicians for Compassionate Care oppose physician-assisted suicide and  promote compassionate care for severely-ill patients.


Palliative care fits Catholic health mission, but too few aware of it

By Nancy Frazier O’Brien
Catholic News Service
WASHINGTON (CNS) — The National Palliative Care Research Center estimates that 90 million Americans are living with serious or life-threatening illnesses and the number is expected to double over the next 25 years.
People nearing the end of life and their families often are confused about the options available to them in terms of pain control and about whether they have an obligation to use all of the life-prolonging technology available to them. These discussions are particularly lively among Catholics and in the West Coast states where physician-assisted suicide is a legal option.
In Washington, the latest state to legalize assisted suicide, Providence Sacred Heart Medical Center in Spokane offers an alternative way of dying. It provides “comfort care suites” that allow family members to stay with their dying relative in a homelike environment.
Music thanatologists specially trained to soothe the seriously ill with their voices or the playing of harps are on staff. Health care professionals participate in education programs on palliative medicine and the ethical, moral and legal issues involved in end-of-life care. A meditation garden outside the hospital is open 24 hours a day and gives family members and patients who are well enough an opportunity to experience a peaceful area of waterfalls, streams and walking paths.
At TrinityKids Care, a pediatric hospice program in Torrance, Calif., teams made up of a pediatrician, a registered nurse, a clinical social worker, a chaplain, a home health aide and specially trained volunteers help dying children and their families make the most of their last days, whether at home or in a hospital or nursing home setting. Anything from household chores to looking after siblings can be part of the hospice program, and the team also offers family counseling and grief and bereavement services when needed.
These kinds of programs are duplicated throughout the country, but too few people know about them when the time comes for them to use them.
“Most palliative care patients come in late,” said Dr. Scott Miller, team physician at the Center for Compassionate Care in Pittsburgh. On average, his patients come in three weeks before their deaths, when they could have been receiving pain management, symptom control and comfort care for many months.
Tina Picchi, executive director of the Supportive Care Coalition in Hillsboro, Ore., believes that a big part of the problem comes from the misperception that “palliative care equals hospice and is only for the end stages of life.”
Palliative care “is appropriate for anyone living with a serious illness, regardless of the prognosis,” she said. “It does not require people to limit their treatment options or to give up.”
The Supportive Care Coalition is made up of 22 Catholic health care member organizations, with more than 450 hospitals, nearly 300 long-term care facilities and numerous clinics, home health care services and hospices providing palliative care in 43 states.
“Our goal is to ensure that every Catholic health ministry has palliative care as a part of its core services — so that we are known as much for palliative care as for our concern for the poor and vulnerable,” it says on the organization’s website.
The coalition was founded by three Catholic health systems in 1994 because, Picchi says, palliative care is a natural extension of the work of Catholic health care.
“At our very roots we have a very strong belief that life is sacred, every person is truly a treasure,” she said. “From the very beginning of Catholic health care, this is the kind of health care that the religious sponsors modeled.
“The first thing that they did was to go out to the homes of people who were dying and provide very whole-person care — physical, spiritual and emotional,” Picchi said. “Palliative care is not just focused on the whole person, but the whole in terms of they and their loved ones together as a family unit. It really ought to be something that Catholic health care is taking a lead in.”
Ron Hamel, senior director of ethics at the Catholic Health Association in St. Louis, says palliative care might provide a welcome relief to a health care approach that has become too focused on what technology can do than on what a patient needs.
“Palliative care really in a sense is a return to those days when we didn’t have the technology to try to cure patients and were limited to providing relief of symptoms and companionship,” he said. “We are so technologically driven today that it is difficult to step back from the technological imperative and see that there is another way to deal with those who are critically ill and dying.”
He places some blame on the way physicians are educated, but also believes that many patients have “an inability to deal with their own finitude” and would benefit from a “more positive statement about dying within a Christian context” from church leaders, followed by a parish-based educational effort.
Hamel also blames “both the extreme right and the extreme left” for “fostering misunderstanding about church teaching and tradition” about the end of life.
In contrast to the position that a patient must be kept alive “at all costs,” he said, “at the heart of the Catholic approach is to neither hasten death nor prolong life endlessly.” Patients and their loved ones must weigh the benefits and burdens of a particular treatment and are not morally required to continue treatment that is “excessively burdensome or without benefit,” he added.
In some ways, Hamel said, palliative care is “nothing new.”
“It’s a return to the kind of care that was provided to the critically ill prior to all this technology,” he said. “It’s a return to our roots in the life and teaching of Jesus and in the early Christian community, which was marked by its care for the sick.”

Different paths bring doctors, patients to palliative care, hospice

By Nancy Frazier O’Brien
Catholic News Service
PITTSBURGH (CNS) — Dr. Scott Miller remembers when he first decided to specialize in palliative care and hospice more than 20 years ago.
He was an intern and saw the disdain with which some attending physicians treated patients who could no longer benefit from the sophisticated medical technology that hospitals could offer.
“‘That’s an intern case,’ they’d say. But we interns knew nothing,” Miller said. “The patients deserved better. It was an emphasis on technology over compassion, and it cemented in my mind that we were doing this backward.”
For Dr. Myles Zuckerman, an interest in palliative care and hospice arose from watching his patients age and develop chronic or life-threatening diseases during his 27 years of private practice as a family physician.
“I saw that they needed extra support, and I started working part time” as a hospice physician, he said. Six years ago he gave up his private practice, and “I haven’t looked back for a moment. I love that I am a part of this.”
Miller and Zuckerman both work now for Family Hospice and Palliative Care in Pittsburgh. Miller is team physician for the 12-bed inpatient Center for Compassionate Care in the Pittsburgh suburb of Mount Lebanon, while also providing medical care on an interim basis at a new 14-bed facility on the city’s East Side.
Zuckerman is chief medical officer, overseeing both inpatient and outpatient medical care. More than 80 percent of the 440 patients served last year received care only in their own homes, while 18.6 percent were admitted to the center at some point during the year.
But Family Hospice and Palliative Care — founded in 1980 by St. Clair Hospital, South Hills Interfaith Ministries, Mercy Hospital and South Hills Health System — offers much more than medical care.
The physicians are assisted by a multidisciplinary team that includes nurses, home health aides, social workers, spiritual care counselors, physical therapists, volunteers and even a 5-year-old golden retriever named Ivan.
A trained service animal, Ivan walks the halls of the Center for Compassionate Care looking for someone who might need a nuzzle or a quick game of tug of war with one of his many toys. He’s at the facility most days but goes home on the evenings and weekends with Rafael Sciullo, president and CEO of Family Hospice and Palliative Care.
Sally Bothe says her husband, Bill, 80, is a “big dog lover” who has “gotten a lot of pleasure” from visits by Ivan to his room. During a late August visit to the center, Bill Bothe was in the final stages of pulmonary fibrosis, a respiratory disease.
Although he had been diagnosed with the disease a year earlier, his decline came very rapidly, according to his wife of nearly 61 years. Bill danced at his grandson’s wedding in May, but when he tried to play golf after his return home, he found himself too weak to play more than a couple of holes.
With their children living in Connecticut and Indiana, the Bothes had no local family members to call on for assistance. After two hospitalizations in June and July, they turned to Family Hospice and Palliative Care for some help at home.
“We were hoping to get some help and guidance and reassurance,” Sally Bothe said. “We got all that and much more.”
In addition to the presence of Ivan and the option for patients to receive visits from their own pets, the center offers a variety of what they call “complementary therapies,” including music and art therapy, massage, aromatherapy and Reiki, a Japanese form of energy therapy that involves the laying on of hands. As patients anticipate the end of their lives, they get help in putting together a personal reflection, which can take the form of an audio, video or photo journal or a piece of art.
When Bill Bothe was released from the hospital but his oxygen levels needed continuous monitoring, he came to the Center for Compassionate Care. “I felt like a load had been lifted off my shoulders,” said Sally Bothe. “I was not in this alone.”
Britt Bothe, their son who lives in Connecticut, said coming to the facility also has eased his father’s fears of becoming a burden to his wife. “It made it easier for Mom, and that made it easier for Dad,” he said.
He said his mother said it best when she said, “It’s not the death; it’s the dying that’s tough.”
“This is new territory for everyone,” Britt Bothe said. “But at least we’ve got this part covered.”