Tag: End of Life Care

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Beyond “The Sessions”: Intimacy at end of life

I did a little follow-up interview with the wonderful people at Life Matters Media.

November 16, 2012
Beyond “The Sessions”: Intimacy at end of life
Dr. Richard Wagner

Dr. Richard Wagner, a Seattle based clinical sexologist, spoke with Life Matters Media this week about the many positive effects physical intimacy may have on the terminally ill. As the critically acclaimed film The Sessions has brought this topic to the forefront, it has left in its wake many issues in which to delve deeper. Wagner, a former Roman Catholic priest, is the author of “The Amateur’s Guide to Death and Dying: Enhancing the End of Life.” He has practiced sex therapy and relationship counseling for more than three decades.

You have a degree in theology from the Jesuit School at Berkeley, and you’re a former priest. How did you get involved with end of life and intimacy?

I was a Catholic priest for 20 years. While that wasn’t a particularly happy association, I’m the only Catholic priest in the world with a doctorate in clinical sexology. I wrote my doctoral thesis on the sexual attitudes and behaviors of gay priests in the active ministry in 1981. That was long before the Church was willing to acknowledge there was even such a thing as a gay priest. The fallout from this research blew my ministry out of the water.

In 1981, the same year I finished my doctorate, a remarkable thing was happening to gay men in San Francisco and elsewhere. They were dying of some mysterious disease. Some speculated that this was God’s retribution for the gay lifestyle. How quickly we leap to that conclusion when we are ashamed and frightened. Most of my friends died in the first wave, between 1981-85. None of us knew what to do. My friends looked to me for guidance, since I had a background in psychotherapy and religion. But, to tell you the truth, I was just as lost as anyone.

I found myself sitting with all these men as they were dying. It was ghastly. But sitting with death was precisely what I needed to do. It helped me to desensitize death and prepared me for what was to come. I realized early on that dying in America is often a very lonely and very passive affair.

I wrote “The Amateur’s Guide” because of the work I was doing with sick, elder and dying people – not just AIDS patients. I saw this pattern develop; the end of life is more difficult than it needed to be. In response I founded Paradigm, a nonprofit organization with an outreach to enhance life near death for sick, elder, and dying people. It provided an opportunity for participants to discuss end of life concerns and get the support they needed to fully live the end of their life. The program was so successful; I decided to put the program in book form.

Let’s talk about intimacy and end of life care.

Just because someone is dying doesn’t mean that they have stopped being human. One of the things that humans need in their life is intimacy. And sometimes that intimacy involves genital sexuality. But this concern is hardly ever talked about in terms of the end of life, nor is it included in disease-based discussions. I mean, when is the last time you heard someone talk about the sexual concerns of people with cancer or heart disease? Our culture is uncomfortable with the concept of sick, elder, and dying people having such desires. But if you listen to these folks they’ll tell you what they need and ho difficult it is to live without.

Could sexual intimacy be considered a form of palliative care?

I would think, yes. If you’ve had an active intimate/sex life up until the point you were diagnosed and then all that suddenly disappears, there will be problems. I’m not just talking about genital sexuality; I’m talking about all intimacy needs we humans have — being present to, touching, as well as pleasure. It’s all about what is possible, on a personal level, with one’s intimate partner(s). So many people, even people who love sick, elder, and dying people don’t know how to touch them. And sick, elder, and dying people often report that the only touch they receive is very clinical touch. And that’s not all the life affirming, if you ask me.

Complete Article HERE!

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End-of-Life Care Should Be Universally Provided and Need-Based

By James Hamblin, MD

Dr. Ezekiel Emanuel, oncologist and chair of the Department of Bioethics at the National Institutes of Health (and, entirely incidentally, brother to Rahm and Ari Emanuel) has long been a champion of end-of-life care. He spoke today with Corby Kummer at The Atlantic’s Washington Ideas Forum, where he made succinct points about strategies for systematic improvements in our approach to caring for those nearest to death.

First, all doctors and nurses should be formally trained in end-of-life care and discussions. Walking into a room with a patient and their family to discuss a terminal diagnosis or prognosis is — especially at first — overwhelming, and impossible to just know how to do. Emanuel admits that facing those situations remains “scary,” even as a veteran clinician. He and most of his generation of physicians never received formal training in how to best discuss terminal illness with patients and offer palliative options, and some in training today still do not. Considering the large number of people who eventually face death, it is unreasonable that not all doctors and nurses are thoroughly prepared to help them as they do.

Emanuel also cited that more than 40 percent of hospitals in the U.S. do not offer access to palliative care, either within the hospital or after a patient has been discharged home. He believes that hospitals should be required to at least offer the option.

And finally, at present, eligibility for hospice care is predicated on having six months to live. Emanuel sees access to hospice as more aptly need-based, not calendar-based. Patients with symptoms warranting palliation, regardless of the estimated length of their remaining life, should be standardly offered care in that vein.

All of these changes would come as part of an ongoing shift in psychology and broader openness about death. Emanuel is quick to add the caveat that he is not talking about euthanasia or [shudder] … “death panels.” His inclination toward explicit clarification on that point stems from accusations that he and other leaders in the realm of end-of-life care have endured in the past. The fact that he still needs to make that clarification speaks to the persistent widespread misunderstanding surrounding quality end-of-life care. That mindset is and will remain the primary barrier to seeing these improvements out.

Complete Article HERE!

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Assisted suicide measure narrowly defeated; supporters concede defeat

By Carolyn Johnson

A divisive ballot initiative that would allow terminally ill patients to end their lives with medication prescribed by physicians was narrowly defeated.

The Death with Dignity Campaign conceded this morning, as unofficial results tallied by the Associated Press showed that, with 95 percent of precincts reporting, 51 percent of voters had opposed the measure, compared with 49 percent in favor.

“For the past year, the people of Massachusetts participated in an open and honest conversation about allowing terminally ill patients the choice to end their suffering,” the campaign said in a statement released at 6:30 a.m. “The Death with Dignity Act offered the terminally ill the right to make that decision for themselves, but regrettably, we fell short. Our grassroots campaign was fueled by thousands of people from across this state, but outspent five to one by groups opposed to individual choice.

“Even in defeat, the voters of Massachusetts have delivered a call to action that will continue and grow until the terminally ill have the right to end their suffering, because today dying people needlessly endure in our Commonwealth and do not have the right to control their most personal medical decision.”

The ballot question has been the subject of a ferocious political battle. After a Boston Globe poll in September showed voters overwhelmingly supported the measure, support steadily eroded in the face of a last-minute effort by a diverse group of opponents, including religious leaders, anti-abortion activists, and conservatives who aired their message in aggressive television advertisements and at church services. The concerted opposition campaign, which also included a major physician’s group, raised more than three times as much money as proponents.

In a statement, Rosanne Bacon Meade, chairperson of the Committee Against Assisted Suicide, said that while some votes remain to be counted, the efforts to stop the measure had been successful. She added that she hoped the result would spark discussions about how to improve medical care at the end of life.

“We believe Question 2 was defeated because the voters came to see this as a flawed approach to end of life care, lacking in the most basic safeguards,” Meade said in the statement. “A broad coalition of medical professionals, religious leaders, elected officials and, voters from across the political spectrum made clear that these flaws were too troubling for a question of such consequence.”

“Tuesday’s vote demonstrates that the people of the Commonwealth recognize that the common good was best served in defeating Question 2,” Cardinal Sean O’Malley said in a statement.

Massachusetts would have followed Oregon and Washington, which have passed similar initiatives to allow terminally ill patients to seek life-ending drugs from physicians. Donations to opposition groups, which raised nearly $2.6 million, came from far-flung Catholic dioceses, fueled in part by fear of a domino effect if the measure were to gain a foothold in Massachusetts.

Proponents of the measure raised about $700,000.

Other efforts to legalize physician-assisted suicide in New England have failed. In 2000, a ballot initiative in Maine lost by a close margin. Legislative efforts to pass a similar bill in Vermont and New Hampshire have been defeated in recent years.

Voters said they formed their opinions about the controversial ballot initiative after careful consideration, informed by personal experiences with family members and by concerns about the safeguards written into the law.

North End resident Paul Santoro, 42, cast a vote against the initiative.

“I’m actually in favor of assisted suicide, but not how this is written,” Santoro said, citing concerns about the proposal’s lack of required psychiatric evaluations and family notification and the lack of tracking for any leftover pills.

Santoro, who works in sales, said he has five children and worries about young people getting access to dangerous, untracked medications.

Alex Coon, 37, voting at the Dante Club in Somerville, said he voted for assisted suicide for a very personal reason.

“My grandmother was Dutch, and she always said, ‘When I get sick, take me home to Holland, because they’ll let me die,’ ” he said.

The Massachusetts ballot measure was modeled after similar legislation passed by voters in Oregon in 1994. If it had passed, it would have allowed terminally ill patients with less than six months to live to request medications to end their lives. Patients would have had to request medication from physicians multiple times verbally and in writing, be deemed competent to make the decision, and administer the lethal dose themselves.

Critics had said the measure was sloppily written and contained insufficient protection for vulnerable patients. Objections ranged from the difficulty of assessing how much time a patient has left to the failure to require a mental health screening by a specialist. Others opposed the initiative for moral reasons, or because it was counter to the fundamental do-no-harm ethos that governs physicians.

The legislation would have required the state Department of Public Health to write rules by March 20, 2013, to require physicians to report when the drug was dispensed, file copies of prescriptions, and help facilitate the collection of other statistical information.

Statistics kept by Oregon and Washington are frequently cited by proponents as evidence that the law is not being abused and poses no large-scale societal threat. Those detailed statistics show that the fatal doses of medication are requested by a small number of patients and used by even fewer.

Oregon’s law was mired in legal challenges for several years, but since 1997 when it was enacted, 935 people have requested prescriptions, and 596 have used them to end their lives. In 2011 in Oregon, most of the 71 people who used the medication were white, well-educated, and suffering from cancer.

In Washington last year, 103 people requested the prescriptions, with 70 using them and 19 dying without taking the drugs. Of those who requested prescriptions and died, nearly half were married, three-quarters had some college education, and the overwhelming majority had cancer.

Complete Article HERE!

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My church seeks to deny a compassionate death … a good death … to those crying out for it

A MINISTER of the Church of Scotland has broken ranks with the Kirk and spoken out in support of a new bill to legalise assisted dying – despite longstanding opposition from the Christian community.
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The Reverend Scott McKenna said the religious arguments put forward by opposing faith groups, including his own church, “do not stand up” and believes voluntary euthanasia can “sit comfortably” within Christian faith.

He delivered a powerful speech at a conference chaired by Independent MSP Margo MacDonald, who has launched a second bid to legalise voluntary euthanasia.

The Kirk and the Catholic Church have come out strongly against the reform. But research suggests more than 80% of the British public is in favour of change.

The event, held at the Royal Society of Edinburgh on World Dignity in Dying Day, also brought together Ludwig Minelli, founder of the Swiss suicide clinic Dignitas, international representatives from the Right to Die movement, and Jane Nicklinson, widow of the late Tony Nicklinson, who this year campaigned for the right to die.

McKenna, Kirk minister at Mayfield Salisbury in Edinburgh, said his views had been shaped by supporting families through the death of a relative suffering from a terminal illness.

“The Church says, ‘You must not kill, ‘You must not take human life’. ‘God has forbidden it’,” he said. “What is wrong with this argument? There is no such commandment.”

“In the Bible, David killed Goliath, David’s armies killed thousands. In the Book of Exodus, in the original language, Hebrew, the sixth commandment is ‘You must not kill unlawfully’. This is a staggering difference. In the Bible there are circumstances in which killing is legally and morally acceptable, such as in battle or executing a death sentence. I am not offering you an obscure interpretation of scripture. It is mainstream: the Church is wrong.”

He said the Church’s other main argument, that life is a gift from God and only God can choose the moment of death, was also “deeply flawed.”

He said: “We are told that we shouldn’t interfere with God’s plan by shortening human life. This is bad theology. It portrays God as brutal and less loving than we are to our pets. When the Church speaks of compassion, it means to ‘stand in someone else’s shoes’ – yet too often the church seem distant, cold and paternalistic. They know best and, based on a flawed theology, seek to deny a compassionate death, a good death, to those crying out for it.”

The minister has previously campaigned in support of gay clergy and same-sex marriage. He delivered a sermon on assisted dying at last Sunday’s service and said the response from the congregation was overwhelmingly positive.

He said: “Almost everyone is speaking from personal experience. They have been at the bedside of a relative. I know people who have gone into a hospice and the family members know they only have a day left. Once they are pumped full of drugs they lasted 14 days. Why is that good?”

McKenna also said his position was supported by some Catholic theologians.

“Anecdotally there are significant Roman Catholic theologians who are in favour but you won’t hear that from the hierarchy. The churches can continue to have their own view but they shouldn’t be allowed to impose it. I hope that compassion will triumph over religious dogma and the decision to die be seen not as suicide or life-defeating but as life-enhancing and an act of immense faith.”

In its consultation response on the issue of the right to die, the Church of Scotland said: “We believe that any legislation which endorses the deliberate ending of a human life undermines us as a society. The Catholic Church has said the legislation would “cross a moral boundary”.

Complete Article HERE!

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End-of-life system is needed in Wisconsin

By Charles E. Cady, Joseph Hansen and Steve Hargarten

This is in response to the Oct. 17 Journal Sentinel article “End-of-life medical care initiative prompts worries about abuse.” The current status of advanced planning for end-of-life decisions is a system that is woefully lacking, and where tools exist, they are of limited utility.

Autonomy is a fundamental bioethical principle: Patients have the right to make decisions affecting their health care, including deciding on the level and type of care they want. The principle of autonomy is no more important than in end-of-life decisions.

These decisions should ultimately be made by the patient but clearly benefit from discussions with health care providers, family, religious leaders and others important in a patient’s life. These decisions should reflect the individual’s goals as guided by his or her personal values and beliefs.

The Wisconsin Medical Society’s Honoring Choices Wisconsin is in keeping with the importance of autonomy, and we fully support this. However, Physician’s Orders for Life Sustaining Treatment (POLST) also must be moved forward in Wisconsin.

As emergency medicine physicians, we have found that the current system of communicating end-of-life decisions is lacking. In practice, it is the opportunity for clear communication of a patient’s wishes at the end of life that is most challenging.

Wisconsin’s do-not-resuscitate (DNR) law is very limiting. While it is the only tool mandated to be recognized by paramedics and emergency physicians, its utility is minimal. The order is only active once a patient has lost his or her pulse (in other words, is already clinically dead) and only pertains to the withholding of CPR. It offers no assistance with regard to other care for a dying patient. Wisconsin advanced directives lack precision, are not orders that can be acted upon by a paramedic and can be very confusing in an emergency situation.

The power of attorney for health care (POAH) system is also imprecise. While this system is a very important component of end-of-life planning, it is limited in emergency situations. Following direction from POAHs is not permitted for paramedics. In an emergency situation, the POAH may also have a hard time remembering that decisions are to be based on the patient’s, not the POAH’s, wishes. Logistically, in an emergency, the POAH is often difficulty to contact.

Physician’s Orders for Life Sustaining Treatment are clear and concise orders that can (and should) be acted upon by emergency personnel. They have been successfully implemented legislatively in 15 states. They take the pressure away from a POAH to make decisions in an emergency and alleviate that sense of personal responsibility for death.

They eliminate the vagueness that is commonplace in current advance directives. They also provide for decisions about care before someone actually dies. Most important, they help plan for the last moments of a patient’s life when clarity in planning and comfort are paramount.

Along with our paramedic colleagues, we encounter patients at the end of life on a daily basis. We see that end-of-life planning is limited. When end-of-life wishes are clearly described, it is an honor to provide that care.

However, these situations are the exception rather then the rule. Consequently, our ability to follow a dying patient’s wishes is limited. The result is often prolonged, painful and futile efforts that may not be desired.

In order to avoid these painful situations and to promote discussion of end-of-life planning, we strongly support efforts to successfully implement POLST in Wisconsin.

Complete Article HERE!

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UI students learn end-of-life planning with Honoring Your Wishes program

By BRIANNA JETT

Planning for death comes at the end of a life, right?

Not always —University of Iowa students in a class have begun to take a closer look at what they would want at the end of their lives in the pursuit to better understand death and how it affects all those involved.

Death and Dying — a class in the School of Social Work — is participating in a program called Honoring Your Wishes for the first time. This program is under the leadership of the Iowa City Hospice.

“In America, we have this idea of invisible death,” said Karli Jacobsen, a UI senior enrolled in the course. “Nobody really talks about it. So the whole point of the class is to get educated about the different kinds of death.”

The goal of the program is to consider what people would want if they were suddenly ill or injured and could not communicate. If the person chooses to, the end result is an advanced-care directive, a legal document in Iowa. The choices made beforehand must be followed.

“This is a way to ensure that people’s health-care preferences are honored and to also relieve family stress at a time of crisis,” said Jane Dohrmann, the director of Honoring Your Wishes.

The students in the class are only required to attend one meeting with an advanced-care planning facilitator, beginning the discussion of their future wishes. Students are also asked to think about whom they would want as their health-care agent — the person who makes the decisions when they are unable.

“You can’t cheat death,” said UI senior Victoria Castillo, a student enrolled in the course. “It’s going to happen. So you might as well be prepared for it.”

Many students take the class because they believe the knowledge they gain will help them in their future careers.

“I don’t really have very much experience with death, and with my field, I am going to come across death a lot,” Castillo said, who is majoring in social work. “I think it would be really nice to be able to have those open conversations I’ve never had before — before I have to do it with a client.”

The two students all plan on continuing the program after their required meeting is finished.

Anyone can speak at no cost with a volunteer advanced-care facilitator as long as they are 18 years old.

“I recommend this process for anyone 18 or older because we don’t know when we might have a sudden illness or injury and not be able to communicate,” Dohrmann said. “This process ensures that there is a person in place that you would want to speak on your behalf. Otherwise, it’s by default whom the medical personal might contact.”

Jacobsen said it can be hard to think about death at such a young age, but once the topic is brought up, it can be a relief.

“Starting the conversation would probably be the hardest — once you start thinking about it, it’s not as hard,” Jacobsen said. “It’s relieving for me because I know I’m putting stress off [my loved one’s] lives if this were to happen.”

Complete Article HERE!