My own experience with hospice and palliative care has not always been satisfactory.
Here's what happened to a dear friend of mine, a retired priest, 4 years ago this month:
I first met Fr. Gerard in 1998 while doing a house call for his mother, Dorothy. A brief initial conversation with them revealed that he was living in a small apartment only a block from my Podiatry practice, and that we shared many common traditional Catholic and pro-life interests. Dorothy later told me that after several years of marriage, she and her husband thought they could not have children, and they prayed to St. Gerard Majella for a child. After several years, Fr. Gerard was born, and was named after St. Gerard. A first class relic of St. Gerard was one of Fr. Gerard's prized possessions, and Dorothy maintained a deep devotion to St. Gerard until her death at age 101.
Fr. Gerard soon became a close friend, and we met frequently for meals. I assisted him with various tasks around his apartment, and he called me frequently for fellowship. He got to know my wife and children well and relied on us for help, as his only brother lived in West Virginia. Fr. Gerard eventually developed Parkinson's disease. We offered to take him into our home, but he declined, and entered a nursing home. We continued to visit him often and took him out to dine at his favorite restaurants.
In late 2007 and early 2008, Fr. Gerard's health declined rapidly. He left a voice message on my cell phone late on a Wednesday in April 2008, asking me to stop to visit. By the time I was able to visit him two days later, he had been admitted to a local hospital for aspiration pneumonia, and had been diagnosed as "terminal" by the treating physician. He was transferred to the palliative care unit and the treating physician and Fr. Gerard's brother insisted that Fr. Gerard wanted no extraordinary care to prolong his life.
I was shocked that he was receiving no water, no food, no IV, only Morphine. His Parkinson's was advancing and the aspiration pneumonia was a crisis, but neither were terminal. We were permitted to wet a sponge to moisten his lips, and he would try to suck all the moisture from the sponge, but we were forbidden to give him a drink of water, ostensibly because of the "risk of further aspiration pneumonia." Fr. Gerard had shared with me his opposition to passive euthanasia in the past, and he was trying to talk to me, but he had become so dehydrated that he could not form any words.
When the attending physician made rounds, I told him my concern that Fr. Gerard was receiving no food or water. The physician asserted that their hospice rules forbid IVs as it only "prolonged the process." A Catholic father of six himself, this doctor then stated, "The public has a misconception that death by dehydration is torturous, but that's not true. Its the most humane way to do this, with the least discomfort. We'll control any discomfort with the Morphine. That's what we're going to do." And with that he looked me in the eye defiantly, turned on his heel and left. I was speechless. I pleaded with Fr. Gerard's brother that he would never have consented to passive euthanasia by dehydration, to no avail.
I have always been pro-life. I had even attended pro-life conferences about euthanasia and I sat on the medical ethics committees of two hospitals in the mid 1990's. I had staff privileges at the hospital in question. But in April 2008, in Fr. Gerard's specific case, I simply did not know what to do. I called four good pro-life priests locally, begging for advice.
They all agreed that "You have to do something, Brian!" but none could offer any specific advice, and none could personally intervene to help save their fellow priest. Another priest I consulted recommended I request a medical ethics committee consultation.
Late on a Thursday evening, eight days after Fr. Gerard had left the voice message on my cell phone, I spoke with a physicians assistant who was on call for the ethics committee. I told her that he was a good priest and a faithful son of the Church who would never agree to being passively euthanized, and I discussed with her the relevant documents from Rome and the USCCB and Pennsylvania bishops. She asked me to enter these documents in Fr. Gerard's chart, and the medical ethics committee would be happy to review the case Friday morning on rounds.
Relieved that there was something I could finally do for this good priest, I went to the hospital Friday morning at 7:00am, asked the unit clerk to formally enter the documents into his chart for the ethics committee consultation, and headed down the hall to visit him.
His room was already empty.
Fr. Gerard had died of dehydration several hours earlier.
I've been studying and researching the palliative and hospice care industry since Fr. Gerard's death. What I've learned is that what happened to him is not the exception, but very common.
As a result, we are in the process of starting a pro-life Catholic home hospice care service in our diocese as a way to offer an alternative to the modern hospice and palliative care industry.
I gave a talk last week on euthanasia. For anyone who doesn't know, the founders of the American hospice movement do not share the Christian beliefs of the hospice movement. Here's an excerpt from my talk:
1)History of Hospice Hospice as a thoroughly Catholic concept
a. Hospice and The Crusaders
(slide: images: Hospitaller, Mother Teresa, Saunders)
Linguistically, the word "hospice" derives from the Latin hospes, a word which served double-duty in referring both to guests and hosts. The name hospice was first applied to the care of dying patients by Mme Jeanne Garnier who founded the Dames de Calaire in Lyon, France, in 1842. The name was next introduced by the Irish Sisters of Charity when they opened Our Lady's Hospice in Dublin in 1879 and St Joseph's Hospice in Hackney, London (1905).
The first hospices originated in the 11th century. The Knights Hospitaller of St. John of Jerusalem, also known as the Order of Hospitallers or simply Hospitallers, were a group of men attached to a hospital in Jerusalem that was founded by Blessed Gerard around 1023 to provide care for poor, sick or injured pilgrims to the Holy Land.
In the early 14th century, the order of the Knights Hospitaller opened the first hospice in Rhodes, meant to provide refuge for travelers and care for the ill and dying. Hospices flourished in the Middle Ages, but languished as military-religious orders became dispersed.
b. 17th to 19th century
(slide: text on Hospitallers, European hospices)
They were revived in the 17th century in France by the Daughters of Charity of Saint Vincent de Paul. France continued to see development in the hospice field; a hospice founded by Jeanne Garnier, opened in 1843. Six other hospices followed before 1900.
The more influential early developers of Hospice included the Irish Religious Sisters of Charity, who opened Our Lady's Hospice in Harold's Cross, Dublin, Ireland in 1879. They expanded internationally, opening the Sacred Heart Hospice for the Dying in Sydney in 1890, with hospices in Melbourne and New South Wales following in the 1930s. In 1905, they opened St Joseph's Hospice in London. There in the 1950s Cicely Saunders developed many of the foundational principles of modern hospice care.
Hospices also developed in other areas. In the United Kingdom, steps were taken to remedy inadequate facilities for the terminally ill with the opening of the Friedenheim in London, which by 1892 offered 35 beds to patients dying of tuberculosis. Four more hospices were established in London by 1905. Australia, too, saw active hospice development, with notable hospices including the Home for Incurables in Adelaide (1879), the Home of Peace (1902) and the Anglican House of Peace for the Dying in Sydney (1907). In 1899, New York City saw the opening of St. Rose's Hospice by the Servants for Relief of Incurable Cancer, who soon expanded with six locations in other cities.
c. The modern hospice movement
(slide: Mother Teresas hospice)
Mother Teresa was the true founder of the modern hospice movement. She opened Kalighat, the Home of the Pure Heart, a hospice for the sick, destitute and the dying staffed by her sisters in Calcutta India in 1952, two years after she established the Missionaries of Charity in 1950. Mother Teresa created many homes for the dying and the unwanted from Calcutta to New York to Albania. She was one of the pioneers of establishing homes for AIDS victims, opening the first hospice for AIDS victims in New York in 1985.
For the secular Anglo-Saxon world, the individual acknowledged as the inspiration for the modern hospice movement is Dame Cicely Saunders, who as a student of nursing in her native England during World War II, witnessed a great deal of suffering and pain. In 1945 her parents divorced and she converted from agnosticism to evangelical Christianity.
(slide: I prayed to know how best to serve God)
I prayed to know how best to serve God, she said. The answer came soon enough. "My story in this field goes right back to 1948 when I was a social worker meeting a young Polish Jew who had an inoperable cancer," Saunders says. "I became very fond of him." David Tasma had escaped the Warsaw ghetto and was dying in a London hospital.
In a 2002 interview for The Daily Telegraph of London, she said, I didn't set out to change the world; I set out to do something about pain."
Tasmas pain, loneliness and anguish had a profound effect on Saunders. She visited Tasma frequently in the last two months of his life. As Saunders and Tasma spoke of his looming death, Saunders had a revelation:
(slide: I realized that we needed not only better pain control but better overall care)
I realized that we needed not only better pain control but better overall care. People needed the space to be themselves. I coined the term total pain, from my understanding that dying people have physical, spiritual, psychological, and social pain that must be treated. I have been working on that ever since.
Compelled by her mission, she volunteered at the Roman Catholic St. Joseph's Hospice in London. Because the patients were perceived as beyond help, the nuns didnt stick to pain control guidelines. Saunders learned to administer morphine before pain appeared, thus staying ahead of the pain. This would later influence her ideas about pain management and treatment. Saunders conceived of giving patients a regular pain control schedule, which, in her words, was like waving a wand over the situation.
A surgeon friend advised Saunders that if she were dedicated to pain management and caring for the terminally ill, people wouldnt listen to a nurse. So, at the age of 33, at a time when there were few women doctors, she studied to be a physician. When she earned her medical degree in 1957 she became the first modern doctor to devote her career to dying patients. In 1967, Dame Cicely Saunders opened St. Christophers Hospice in London and sparked the modern hospice movement. Saunders emphasized focusing on the patient rather than the disease and introduced the notion of 'total pain', which included psychological and spiritual as well as the physical aspects. She experimented with a wide range of opioids for controlling physical pain but included also the needs of the patient's family.
She disseminated her philosophy internationally in a series of tours of the United States that began in 1963. A few years before Dr. Saunders opened St. Christophers, she delivered a lecture at Yale University in New Haven about her ideas. Among those in the audience was Florence Wald, then dean of Yales School of Nursing. According to Wald, Dame Cicely's words changed the direction of her life. Wald left the deanship in 1968 and traveled to London where she worked at St. Christophers hospice to learn its approach to patient care and to study the hospice's organization and management. Six years later, in 1974, with the help of two physicians, Florence Wald founded Connecticut Hospice in Branford, on the outskirts of New Haven. As the first hospice in the United States, it was also first to offer home care.
At about the same time that Saunders was disseminating her theories and developing her hospice, in 1965, Swiss psychiatrist Elisabeth Kübler-Ross also began to consider the social responses to terminal illness, which she found inadequate at the Chicago hospital where her American physician husband was employed. Her 1969 best-seller, On Death and Dying, was influential on how the medical profession responded to the terminally ill, and along with Saunders and Florence Wald, helped to focus attention on the types of care available to them.
(slide: Diverging paths)
2) The diverging philosophical paths of traditional Christian hospice care and the emerging secular hospice/palliative care movement
While the history of the development of hospice care was thoroughly Catholic, and Dame Cecily Saunders was a devoted Evangelical Christian, the two primary founders of the American hospice movement, Florence Wald and Elisabeth Kübler-Ross, were decidedly not Christian.
Saunders was strongly opposed to euthanasia, partly because she was a committed Christian, and also because she argued that effective pain control is always possible and that euthanasia is therefore not needed. Her position was that a person who requested euthanasia had been failed in some way by others. She did acknowledge, however, that both sides in the euthanasia debate are against pointless pain and impersonal indignity. On at least one occasion she invited a distinguished doctor on to a committee, but withdrew the invitation after he told her that he was a member of the Voluntary Euthanasia Society.
The American hospice movement differs from its British parent in one key respect: its founder, Florence Wald, was both an agnostic and an open advocate of euthanasia. Wald told the Journal of the American Medical Association in 1999:
(slide: Wald Quote)
I know that I differ from Cicely Saunders, who is very much against assisted suicide. I disagree with her view on the basis that there are cases in which either the pain or the debilitation the patient is experiencing is more than can be borne, whether it be economically, physically, emotionally, or socially. For this reason, I feel a range of options should be available to the patient, and this should include assisted suicide.
Elisabeth Kübler-Ross is widely known for her 1969 best-seller, On Death and Dying, and workshops and books based on her research form the backbone of many bereavement programs throughout the hospice and palliative care field. She was an advocate and leader in the field of end of life care in America and abroad throughout her life.
Unfortunately, Kübler-Ross was also a strong advocate of New Age beliefs (she provided a hearty endorsement for the dust cover for the New Age novel The Celestine Prophecy) and reincarnation, and included spirit mediums in some of her workshops with widows at her mountaintop retreat in Escondido, CA. There was a serious scandal concerned the involvement of Kübler-Ross and some of the grieving widows visiting her retreat with a self-proclaimed spirit medium who conned them all into believing that he not only had the ability to channel "afterlife entities," but even to facilitate the departed dead having conjugal relations with the grieving widows. "There are those who might say this has damaged my credibility," Kübler-Ross said, when she finally conceded that the spirit medium's behavior "did not meet the standards" of her retreat. But it's not important "whether people believe what I say ... I'm a doctor and a scientist, who simply reports what she sees, hears, and experiences."
Eventually, Kubler Ross would go on to proclaim, Death does not exist. Following one of her own workshops, she related an out of body experience in which she encountered "afterlife entities." She stated, "I saw myself lifted out of my physical body. ... [I]t was as if a whole lot of loving beings were taking all the tired parts out of me, similar to car mechanics in a car repair shop. ... I had an incredible sense that once all the parts were replaced I would be a young and fresh and energetic as I had been prior to the rather exhausting, draining workshop." After several of these out of body experiences she began to speak about death as the fountain of youth. "People after death become complete again. The blind can see, the deaf can hear, cripples are no longer crippled after all their vital signs have ceased to exist." This idea of reincarnation following bodily renewal was a dangerous New Age deception that could make suicide seductive to the physically and mentally troubled.
(slide: The embrace and promotion of euthanasia within)
3) The embrace and promotion of euthanasia within large segments of the secular hospice/palliative care movement
The foundations of the parallel palliative care field are even more disturbing.
The first organized euthanasia movement in America emerged in the 1930s and was known as the Euthanasia Society of America. Its strategy was first to secure legalization of passive euthanasia as a way to prepare public opinion to accept active euthanasia, commonly known as physician assisted suicide. But there were conflicts within the movement and by 1980 there came to be two distinct wings when the more militant branch split off. The militants call themselves the Hemlock Society, Death with Dignity and Compassion and Choices. This wing advocates for physician assisted suicide.
(slide: Ron Panzer euthanasia history slide)
(slide: Life Tree: Euthanasia Proponents in US)
The more nuanced wing, which is a continuation of the Euthanasia Society of America, gave itself more beneficent-sounding names which included Society for the Right to Die and Concern for Dying in the 70s and 80s, Choice in Dying in the early 90s, Partnership for Caring in the late 90s and Last Acts Partnership in the early 2000s. This wing claimed to be against physician assisted suicide.
(slide: Daniel Callahan Denial of nutrition)
But listen to how Daniel Callahan, a major proponent of this more nuanced wing, described the problem in 1983: Denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die. And he observed that a deep seated revulsion exists over the prospects of withholding or withdrawing nutrition and hydration.
In order to push this agenda, and break down the cultural barriers to it, the new field of bioethics was born in the 1970s. Both wings of the right-to-die movement and the emerging bioethics think tanks such as the Hastings Center, led by Daniel Callahan, worked TOGETHER to change attitudes and behavior, working to change the culture, painting the issues in terms of compassion versus technology.
Today bioethics is embedded in formal governmental regulations, state and federal laws, and medical ethics guidelines around the world. Bioethics is a subfield of ethics that was created in the 1970s and it quickly became internationally accepted. From its philosophic base has come the utilitarian culture that now threatens to permanently change the culture and practice of medicine.
Strategy and Program Design
(slide: The new bioethics consensus)
The ultimate goal of the new bioethics has been the creation of a new consensus:
Among the major foundations spearheading this effort are 1) the Robert Wood Johnson Foundation, which funded the research, and infrastructure, and 2) George Soros Open Society Institute/Project on Death in America. In the last two decades these two foundations provided hundreds of millions of dollars to advance the integration of their version of palliative care into the American health care system. Soros Open Society Institute/ Project on Death in America began funding a Faculty Scholars Program which provided a leadership base for promotion of palliative care into mainstream medicine.
(slide: Bruce Jennings quote)
There are always reasons to hope. Despite these massive amounts of money and the powerful forces pushing this agenda, they have not completely succeeded in their efforts, as evidenced by a quote from the 2005 Hastings Center Special Supplement Report written shortly after Terri Schiavo died. The author of the Preface complained:
What progress has been made is now in danger of being undone. The framework of principles for legitimate decision-making at the end of life built by the courts, the legislatures, and in professional and ethical literature has not been embracedindeed, it has been rejected, at least in large part by increasingly powerful and vocal minorities; and political support for this framework, as well as its intellectual justification, seems to be eroding. This is a CRITICAL PROBLEM.
(slide: Likely future developments in light of Demographics)
Extraordinary care? He was denied ordinary care, at least by Catholic teachings.
Everyone should have an advance directive to protect himself from unnecessary medical treatment at the end of life. Withholding/withdrawing food and water is a natural and even pleasant way to die, and is a perfectly ethical means of controlling the time of death. The principle of double effect can be used to justify terminal sedation.
People I know in the medical field tell me that starvation is one of the worst ways to go. However I do agree with this part.
Everyone should have an advance directive to protect himself from unnecessary medical treatment at the end of life.
Advance directives can also protect you from Michael Schiavo types of situations where he wants the insurance money.
Since I am not a doctor, but a raw grieving widow, I do not have the energy (or the knowledge) to debate a topic fraught with so much political heat, considering the Obamacare issue.
All I can do is offer my husband’s predicament, his expressed wishes, and his personal Roman Catholic faith as it guided his choices.
He did not want a feeding tube, and did not want an IV tube. He was diagnosed as a Parkinson’s patient, but had many symptoms that did not fit that diagnosis, and for which the normal meds prescribed did nothing to help his most painful symptoms.
He had every right to choose not to go back into a modern hospital, which exacerbated his illness, and which was unable to treat his most painful symptoms.
After the third hospitalization, he begged me, and his adult children, not to subject him to that torture again, and the subsequent need for weeks of “rehab” were even harder for him, and distressed him even more.
Please consider - there is was no estate to inherit, all any of us wanted to do is to keep his final days as comfortable as possible. He was seen by the best neurologists, and neuro-psychiatric specialists in the Minneapolis area, and also spent several weeks being treated by the Mayo Clinic.
Nothing they had to offer helped to relieve his autonomic nervous system problems. Nothing they tried worked.
Hospice isn’t a panacea - Please know that I am not suggesting that.
I am surrounded with Parkinson’s patients in my “adult living” building who never have the problems my husband suffered.
But, I am so weary of explaining that Parkinson’s is a “catch-all” diagnosis of many different diseases of the brain, and is so easily attached as a label to anyone who suffers a movement disorder. Until a brain biopsy is done after death, who knows whether it was Lewy-Body, Autonomic Nervous System failure or whatever else they haven’t figured out, yet.
I am also sick and tired of dealing with doctors who try to fit patients into pigeon-hole diagnoses, and who are all to ready to pass them off to another medical center when the usual drugs don’t “work” the way they are supposed to, according to the salesmen that come around.
When I get hit by a truck, fall off the roof, slip on the ice, or get shot by someone in the ‘hood - the emergency room is my best chance.
When I get a chronic disease - I am sorry, I have no faith in modern medicine. Our recent experience suggests that hospice is a wiser choice.
Of course, that is just my opinion. Everyone else is free to consider whether the side-effects of the drugs pushed by the pharmaceutical companies are worth it, particularly when they do nothing to correct or resolve the underlying cause, but only treat the symptoms, but then cause new symptoms, needing new drugs, and so on into infinity.
You are entitled to your own opinion of the marvels of modern medicine, as I am entitled to mine. It totally failed my beloved husband, and I am bitter. He was only 72, and I wanted so many more years with this wonderful man.
I didn’t get them, but it wasn’t because of Hospice. They were the only ones who cared about his constant severe muscular pain.
Your experience was my experience. I was not going to subject my husband to no hydration/no food, and see him slowly die in that condition.
Numerous times he told me not to give up on him, don't let anyone pull the plug until you know my brain is totally dead.
I have a Ph.D. in counseling psychology and was a licensed EMT - I knew about minds and bodies.
I also know medical doctors know little about death - they avoid it. Once they can't do more, they want rid of the problem.
So many times I was asked, “Does he have a Living Will?” Every time I said, “A Living Will is a Death Will. I have a medical power of attorney for him and I make the medical decisions.” I gave out many copies of the Medical Power of Attorney.
A “Living Will” says, “don't save me, let me die.”
I am sure numerous doctors during that time hated to see my medical power of attorney - they had to get my okay before they could kill him by withholding extraordinary care and I wouldn't let them starve him to death or not put him on a ventilator when he had trouble breathing.
One doctor said, well, you may have a medical power of attorney but you are the wife so that matters. I said this is a legal document that no one in the extended family can question, so it matters.
Your priest friend so needed someone he trusted, like you, to have a medical power of attorney for him. You could have stopped what they were doing to your friend.
My son has my medical power of attorney and he knows my wishes and I literally trust him with my life.
The medical community is made up of people who go to work and go home. They do not consider your loved one once they leave that place and they would leave early if they could. You are the one who cares and you are the one who has to know the landscape to protect your loved one.
Dr. Kopp - does someone you trust have your medical power of attorney?