Compassion & Choices Coordinator: We Protect Patients And Doctors
Posted on Tuesday, September 24th, 2013 at 10:11 am by lifemediamatters
The organization Compassion & Choices serves to defend doctors and protect the rights of terminally ill patients, said Regional Campaign and Outreach Manager Roland Halpern during an informational event the group hosted in Wilmette, IL Sunday. Halpern answered questions from long-term and prospective members of Compassion & Choices, the nation’s largest organization with a stated mission of expanding options for patients at the end of life.
Halpern highlighted the case of Dr. Joan Lewis, a New Mexico oncologist who in 2001 faced the loss of her medical license for prescribing large doses of narcotics to help treat her patients’ chronic pain. According to The Albuquerque Tribune: The state Board of Medical Examiners accused the Albuquerque specialist of injudicious prescribing” of narcotics for six pain patients. The assistant attorney general called her practice “voodoo.”
Halpern said Compassion & Choices filed a friend-of-the-court brief and provided information about pain management and treatments. “The problem with what’s on the prescription box, is that it’s a recommended dosage based on what 40-year-old-males test out for during particular clinical trials. At the end of life patients are not usually 40 or have just one illness- some people respond to lower doses and some people need higher doses of pain medications,” said Halpern. “It’s not like all of her patients were dying or getting addicted. There really is no upper limit when someone is dying of cancer, as long as medication is introduced gradually and over time.”
The oncologist’s medical license was reinstated. “We believe that if a doctor is willing to be aggressive in treating end of life pain, they shouldn’t be left out to dry if something happens, and a medical board threatens them,” he said.
The non-profit arm of the organization also provides several services to patients facing death, including referrals to specialists or organizations, end of life counseling and advance care planning. “We never charge for such services, and we service clients in any state,” said Halpern.
He also advised non-Catholics about restrictions within Catholic hospitals and hospices. “You need to interview the hospice or hospital and say ‘these are my wishes,’” he said. “If it’s got a ‘St.’ in front of it, it may not be a good choice for you if you want to have a feeding tube removed.” Halpern asserted that Compassion & Choices is committed to keeping religion out of medicine.
The legal arm of Compassion & Choices advocates for aid in dying legislation across the U.S.– physician-assisted suicide (“Death with Dignity”) for mentally competent terminally ill patients. Such legislation varies state to state. Physician-assisted suicide is banned in Illinois.
But Halpern maintains Compassion & Choices does not support suicide or euthanasia. “Suicide is choosing death over life,” he said, then noting how a terminally ill patient is already in the process of dying.
“We need to have an open dialogue about death and dying,” Halpern said. “We’ve got to get back to the point where we talk about it and realize it’s not some scary thing.”
Practical Tips: A “How To” Guide To Intimacy After Diagnosis
Posted on Thursday, September 19th, 2013 at 7:53 am by lifemediamatters
“Now there’s a million dollar idea! Someone ought to write a no nonsense instructional booklet for the men folk, one that we would automatically recognize and understand. One that would help us, step by step, through the harrowing experience of having a person we love at death’s door.”
My first Relationships and Intimacy column was titled “It Never Entered My Mind.” It recounted a conversation I had with a woman who told me of the very painful personal experience she had while attending the death of her beloved husband in a Midwestern hospice. Apparently, it struck a chord with some. I don’t get a lot of correspondence from people who read my columns, but every now and again the odd email or letter will show up, and I am reassured that my efforts haven’t been for naught. I love when that happens.
Not long after that first column appeared, I got an email from a fellow who may have seen it. He didn’t reference it directly, but it would have been quite a coincidence had he not. This fellow wanted some practical tips on how he might broach the subject of sex with his wife who had been recently diagnosed with ovarian cancer.
The man’s name was Alex. What struck me most about his message was his manner. In typical male fashion, he got right to the point.
He even laid out his questions in bullet points- a very typical “man thing” to do. Even though he made no mention of his anxiety, I could easily tell he was supremely worried that he might fail his wife in some way during her hour of need. His email reeked of the kind of performance anxiety I so often see in my sex therapy private practice. His wife’s disease process shook his confidence to the core.
He was looking for a “how to.” You know, like the kind of owner’s manual one would find included in the box of a new power tool. I thought to myself as I read his email- Now there’s a million dollar idea! Someone ought to write a no nonsense instructional booklet for the men folk, one that we would automatically recognize and understand. One that would help us, step by step, through the harrowing experience of having a person we love at death’s door.
SAFETY INSTRUCTIONS AND INSTRUCTIONAL MANUAL WARNING
IMPROPER OR UNSAFE use of this power tool can result in death or serious bodily injury. This manual contains important information about product safety. Please read and understand this manual BEFORE operating the power tool. Please keep this manual available for other users and owners before they use the power tool. This manual should be stored in a safe place…
There would be lots and lots of diagrams and symbols and even a schematic or two. Of course, there would be pages and pages of dos and don’ts.
NEVER touch moving parts.
NEVER operate without all guards in place.
ALWAYS use the right tool for the job.
NEVER use a power tool for applications other than those specified.
NEVER use a tool that is defective or operating abnormally. ALWAYS use protective eye gear.
Alex’s message was a manly cry for help. It was clear to me that even though he loved his wife dearly, he had some deep misgivings about his capacity as an effectual lover- even under the best of circumstances. Now that his wife had undergone radical gynecological surgery, he was even more adrift than ever.
It didn’t help that Alex couldn’t or wouldn’t use even medical terms regarding his wife. I couldn’t tell if he didn’t know the vocabulary or if he was just too embarrassed to type it. When words failed him, he used that universal euphemism, “down there.”
I had my work cut out for me. I was tempted to do some remedial sex education. I could have included some diagrams and symbols and even a schematic or two. In the end, I decided to forego an elaborate response that might have overwhelmed him. I decided to answer, as succinctly as I could, each of his questions.
“I don’t know what your wife wants or needs. But there is a mighty good way to find out. Ask her!”
“Discussing sexual concerns in a crisis is never going to be easy, especially if you don’t have a history of doing so.”
“Maybe that’s a question you and your wife could bring to her oncologist.”
“Yes, I can assure you that both the surgery and the chemo will affect your wife’s interest in sex. Don’t take it personally.”
I answered all the questions he posed as best as I could. Then I added a personal note.
“Alex, my friend, I suggest that before you approach your wife with this discussion- you might do a little homework. Maybe if you knew what it is you are looking for in your intimate relationship with your wife at this time, at least one of you would have a leg up on the upcoming conversation.”
I directed him to my book, The Amateur’s Guide To Death And Dying; Enhancing The End Of Life, not because I wrote the blasted thing, but because it contains an entire chapter on sex and intimacy concerns for sick, elder and dying people and their intimate partners. It’s as close to a “how to” guide as I’ve ever seen. I invite readers to consider the following: Some Questions about Sexuality and Intimacy.
I posed five simple questions to help my readers focus their attention on their own sexuality and intimacy needs.
1. How important is sexuality in your life?
2. Is there’s a difference between sexuality and intimacy?
3. Do you have a range of options in which to experience your sexuality? If yes, what are some of them?
4. How well are you able to communicate your needs for sex and/or intimacy to your partner(s)? Are there any specific issues that get in the way of asking for what you need?
5. What are your biggest concerns about your sexuality as it relates to your disease, aging and/or dying process, or the disease, aging and/or dying process of your intimate partner?
I had great confidence that if Alex took my advice and answered these questions honestly, he would be ready to approach his wife to find out what she wanted and needed from their intimate life post diagnosis and surgery. I suggested that once he had answered the five questions, he could offer her the opportunity to do the same. Once they had both answered the questions, they could set up a time to discuss their answers.
While this approach wouldn’t make the experience any less daunting, at least they would have a roadmap to get them where they needed and wanted to go.
Art And Death: An Interview With Collector Richard Harris
Posted on Sunday, August 18th, 2013 at 10:00 am by lifemediamatters
Having just concluded “Death: A Self-Portrait,” a successful London-based art exhibit focusing on death and dying, Richard Harris, 75, shared with Life Matters Media his thoughts about art, religion and mortality. He presented ”Morbid Curiosity” two years ago at the Chicago Cultural Center, which went on to become the center’s most successful exhibit ever– it drew more than 150,000 visitors during its six-month run.
What do you believe drew so many to your exhibit?
I think there’s a unsatisfied beast in all of us who wants to find out a little more about death. My art wasn’t odd or horrific and it didn’t make people uncomfortable– I did not want to deliberately make it provocative. I like strong art. The pieces are meaningful and attractive, that’s why I purchased them. I think people took it in that same way.
How did you amass such a collection?
I majored in economics at Queens College– I was not a very good economics student. My family said there was no way to make a living through art. So I came to art through the back door, as a sales person with my small entrepreneurial business selling art all over the country for 40 years. I also have an interest in human anatomy, it started with skulls and skeletons– they were all related to death. I thought ‘let’s make it a death collection.’ I’ve never done thematic exhibits before.
Do you have a favorite piece?
One of my favorites is “Gentleman On Green Table” a little piece by June Leaf, an American artist in her 80s. Part of the war segment of my collection, it’s a skeletal figure sitting on a green table, it’s made of tin. The skeleton representing death looks exhausted by war and conflicts, as if death even says ‘enough.’
Are you religious?
I’m Jewish, and I don’t believe in the hereafter, though most religious art is based on Catholicism. Early Baroque and Renaissance art was religion-based, and the Church would commission it. It scared people with visions of hell, heaven and purgatory. It urged people to live a good life on earth. In the 14th, 15th and 16th centuries, most people were illiterate- they got their information visually. The art could be viewed as propaganda that sold the Church’s thoughts and edicts.
Are discussions about death still taboo?
Death is an unspoken. I don’t know if there is a taboo against it, but many people are just uncomfortable with discussions about death. I think conversations are becoming more popular in television and magazine articles. There are more opportunities for discussion.
Did the Midwesterners who visited “Morbid Curiosity” differ from visitors to your more recent exhibit “Death: A Self-Portrait” in London?
It’s an interesting world that I’ve entered with my art collection. At the Chicago exhibit, I wanted to have some sort of addendum program in addition to the art itself– usually during the evenings. We invited people to talk about death from a religious point-of-view, death from a legal point-of-view, death from a medical point-of-view. It was all very well received. The people who attended the shows had an interest in the art and the subject– they were open and wanted to know more about death and how to prepare for it. The crowds in London and Chicago were very similar, though more attended the Chicago exhibit. Only a tiny, tiny minority were turned off. Death is a universal.
What does your future hold?
I want my art to be exhibited to as many people in as many parts of the world as possible. Later, I would like to setup a death-study program at a university with my collection. I don’t know if such a program exists today, but students should have coursework related to death throughout their studies.
Psychological Responses To End Of Life
Posted on Sunday, January 20th, 2013 at 11:43 am by Life Matters Media
Nurses’ positive attitudes towards death and dying can alleviate the suffering of some terminally ill patients, according to new findings from Spanish researchers published in the International Journal of Nursing Studies.
Lead researcher Rafael Montoya-Juarez, from the University of Granada, and others sought to identify the psychological responses the terminally ill put in place to deal with the demands the end of life brings. The study is intended to be “a foundation for future nursing interventions.”
Researchers questioned 24 patients from various hospitals across Granada using a phenomologic approach. “Phenomenology is the appropriate theoretical approach to the study of suffering,” the researchers explain. “Because we assume a model of suffering based on the response to threats, we have transcended the purely descriptive approach by interpreting the data in light of this model.”
The participants’ answers to these questions allowed the researchers to identify a main category titled, “To realize that life is short.” As coming to terms with life’s finite nature is a main source of psychological discomfort for patients, it is also a starting point for developing psychological responses to reduce suffering.
Three categories emerged that showed different ways participants came to terms with death: “Re-Evaluation of life,” “Opportunity for growth” and “Resignation/Acceptance.”
Upon re-evaluating their lives, some patients became hopeful and reassured in feeling they met life’s major goals. “I have already done, as they say, the thing in life. I got married, I raised a child, I planted many trees in the field and I have done harm to no one and I am thus waiting for whatever God wants,” one participant said.
Others reported feeling more frustrated. ”This is one of the most saddening things, when you truly realize that life has an end, and you think, I did not do this or the other,” another participant told researchers.
Still, the dying process provided some participants with an opportunity for growth, the conviction that a terminal diagnosis helps determine one’s place in life. Those with this mindset tended to appreciate the simpler things in life. ”The illness has caused me to see life from a totally different perspective, to enjoy the small things and the big things, and to undervalue others,” another said.
Others said they felt relieved that life was coming to an end, and they had a sense of acceptance. “One has to accept and consider it as good because there is nothing that can be done about it,” one participant said. “You have to accept everything.”
Gender seemed to play a role in how an individual responded to a terminal diagnosis and death. Out of the fifteen men and nine women studied, men were more concerned about the loss of their job, social relationships and loss of physical functions. Women spoke more about their homes and daily routines, especially caring for their children. Women were also more likely to bring religion into their struggle, as if it were part of God’s will.
Nurses can alleviate the emotional impact of terminal illnesses on their patients by encouraging these psychological responses, the study concludes. Montoya-Juarez recommended that nurses provide realistic and achievable short-term goals for their patients, facilitate communication with family and enhance the feeling of satisfaction with life.
Palliative Medicine, Hospice Care?
Posted on Tuesday, December 4th, 2012 at 7:50 pm by Life Matters Media
Despite its growing popularity in hospitals, most Americans remain unaware of the comfort and benefits palliative care can provide some terminally ill patients.
“There is a clear need to inform consumers about palliative care and provide consumers with a definition of palliative care,” researchers commissioned by the Center to Advance Palliative Care advise. According to Public Opinion Research on Palliative Care, seventy percent of the general population doesn’t know anything about palliative care, and 14 percent were “somewhat knowledgeable.”
The researchers also found that it is difficult to inform physicians about palliative care, because they often wrongly equate it with hospice or end of life care.
Palliative care becoming more popular
Palliative care is treatment that enhances comfort and improves the quality of life for patients in life’s last phase. No therapy is excluded from consideration, according to the National Hospice and Palliative Care Organization (NHPCO).
Palliative care is becoming increasingly widespread. There are more than 1,600 hospitals that have palliative care programs in the U.S., according to Dr. Diane Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine. Some 85 percent of large hospitals have a palliative care team. Sixty-seven percent of small hospitals have programs.
Dr. William H. Frist, a heart transplant surgeon and former U.S. Senate Majority Leader, recommends palliative care. ”[A] brand new field in medicine is making chronic, agonizing, and even terminal illnesses much more manageable… palliative care has emerged as the best solution for those facing serious, painful diseases, and introduces the very real possibility… that we can now live with these diseases for a long time,” he wrote recently for The Week.
Palliative care also costs much less than aggressive end of life regimens. Patients who receive palliative care services cost hospitals between $1,700 and $5,000 less per admission, according to findings published in the Archives of Internal Medicine.
Hospice care remains overlooked
Hospice care is different from palliative care; its aim is to manage symptoms so that a person’s last days are spent with dignity and quality. The care is not intended to treat the disease but the person, according to the American Cancer Society.
Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less.
“Many people believe that hospice is only for people who have cancer. This may be due to the fact that many of the patients cared for in the early days of hospice were cancer patients,” Becky Hillier, public relations director for Rocky Mountain Hospice, wrote for the Montana Standard. Less than 25 percent of hospice patients admitted to the hospice are cancer patients.
The NHPCO reports that 36 percent of hospice patients die or are discharged within seven days of treatment. Many terminally ill suffer more than they need to because they wait to enroll in a hospice program.
“We continue to see more dying Americans opting for hospice care at the end of their lives, yet far too many receive care for a week or less,” said the NCPCO’s J. Donald Schumacher. “We need to reach patients earlier in the course of their illness to ensure they receive the full benefits that hospice and palliative care can offer.”
One reason the terminally ill wait for hospice, he said, is due to the misconception that hospice means giving up.
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