Tagged: disease

June 12, 2013

Changing Costs and Care at the End of Life

Julie Goldstein, M.D., Martha Twaddle, M.D., Mary F. Mulcahy, M.D., Randi Belisomo, M.A — Julie Goldstein, M.D., Martha Twaddle, M.D., Mary F. Mulcahy, M.D., Randi Belisomo, M.S.J.

Palliative care is an expanding and increasingly vital specialty of medicine, said end of life care expert Martha Twaddle, M.D., at a presentation for the Association of Health Care Journalists- Chicago Chapter.

“When I joined the American Academy of Hospice and Palliative Medicine, there were 50 of us– 25 were from Australia and the UK. Now, the membership is well into the thousands,” said Twaddle during the presentation, “Changing Costs and Care at the End of Life,” which included Life Matters Media co-founders, Randi Belisomo and Mary F. Mulcahy, M.D., and Advocate Illinois Masonic palliative care physician Julie Goldstein, M.D.

The presentation sought to explore end of life options in light of the “death panels” controversy, one which effectively eliminated efforts to compensate physicians for facilitating end of life discussions with patients.

Physicians typically only spend fifteen to twenty minutes with each patient. “It’s not a lot of time,” Mulcahy said. “You cannot go into these discussions with an agenda, you really have to speak with the family, the patient.”

In a complex field such as oncology, physicians must not only address disease treatment, but symptom management as a result of that treatment as well. In the course of a twenty minute appointment, treatment and symptoms are often too much to cover effectively; therefore, a robust discussion surrounding end of life issues is often not possible, Mulcahy said. These discussions, because their relevance may seem “far off” for patients, are frequently given low-priority by physicians and thus delayed.

Palliative medicine and hospice care allows patients more comfort at the end of life by reducing aggressive treatments and emphasizing pain management. Still, most patients remain skeptical or unaware of such treatments. Some physicians do not mention such care out of fear of being accused of “giving up” on their patients. Others simply avoid comprehensive end of life conversations altogether.

“When I sit down with patients and they say, ‘What’s palliative medicine?’ It’s easy to contrast it to what it isn’t, i.e. current medical care,” Twaddle said. “Current medical care is based on a biomedical model: here is the diagnosis, here is the treatment.”

However, palliative care is based off the roots of medicine, Twaddle explained, a biomedical-psycho-social-spiritual model. This “allopathic model” aims to cure the whole person, both body and soul- not just the disease. This model has been lost since the time of Descartes and the onset of modern technologies, she said.

“Palliative medicine’s secret agenda is to restore the wholeness of medicine, to bring it back to the person,” Twaddle said. Instead of beginning a doctor-patient dialogue with a discussion about treatment, care starts with a physician asking questions about the patients’ beliefs, ideals and wishes- what Twaddle called “the art of communication in medicine.”

Recently, Frederick Smith, M.D., director of clinical ethics at North Shore-LIJ Health System, said physicians have an ethical duty to inform their patients facing the end of life about hospice and palliative care services.

Smith’s presentation, part of the University of Chicago’s second annual Conference on Medicine and Religion, criticized the choices of many physicians who urge their patients to continue with more aggressive, painful treatments instead of more comfortable end of life care.

What is your ‘Medical Mindset?’: Dr. Groopman suggests you define it

Dr. Jerome Groopman says when it comes to making medical decisions, he is a “maximalist,” a “technologist” and a “believer.” These qualities color his own choices and advice to patients, and he says they emerged directly from his Jewish upbringing.

We all have a medical mindset, Groopman argues, and it can be easily pinned down and translated for more effective communication in health care. It accompanies us from early childhood through the end of life, whether we are in the role of patient, physician or caregiver. The Harvard University oncologist and author discussed his own mindset and how we can determine ours at the Association of Health Care Journalists Conference this week in Boston, MA.

Culture and upbringing are perhaps the greatest shapers of a medical mindset. Groopman is the son of eastern European immigrants who put physicians “on a pedestal,” he says, and any natural medical intervention apart from the latest technology was viewed “as a throwback to village life.” His oncological training at the advent of bone marrow transplantation reinforced his faith in intense intervention.

When medical decisions must be made, Groopman advises patients to evaluate both their own mindset and that of their doctor. Having the vocabulary to describe mindsets is crucial, and Groopman suggests that anyone involved in such decisions should consider assigning oneself with the following labels. (Select one word from the following three pairs).

1) Maximalist- “A maximalist is someone ahead of the curve,” Groopman says. They typically favor medication as a first-resort, whether or not there is a proven benefit. Maximalists often choose surgical intervention,aggressive chemotherapy and intensive care.

Minimalist- “A minimalist is someone for whom less is more,” Groopman says. Minimalists do not jump at the chance to take medication, and are far more likely to hold off on any invasive medical intervention. They often believe in “waiting it out.”

2) Believers- “Believers are certain there is a good solution to their problem,” Groopman says. Believers have faith that when they take a pill, they are on their way to better heath. They are generally trusting of physicians and the medical system.

Doubters- Doubters often worry that any treatment may be worse than the disease itself. They delay medication and therapy until absolutely necessary.

3) Technologists- With such a mindset comes a faith in prescription drugs, invasive
therapies and hospital stays.

Naturalists- Naturalists would rather take a vitamin or herbal supplement than any
drug.

Groopman says patients are able to better communicate with their physicians and better assess their end of life preferences if they identify their mindsets. Surrogates are better able to act on behalf of patients if medical mindsets are considered and discussed.

Pamela Hartzband, M.D., Groopman’s wife and an assistant professor and attending physician in the Division of Endocrinology at Beth Israel Deaconess Medical Center, says she agrees with her husband on the importance of evaluating one’s medical mindset. Hartzband and Groopman received similar medical educations, are on staff at the same medical institution, and are married, but her mindset still differs from his.

Hartzband says she is a “minimalist” and a “doubter,” and she hopes to help implement training on medical mindsets in medical schools, as mindsets are often set by young adulthood. The language Groopman outlined has proven beneficial to her as both a patient and a physician. “The language has helped us in our own clinical interactions, and when used, patients have expounded on it,” Hartzband says.

-Randi Belisomo

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January 9, 2013

Organ transplants: Who should receive them?

The growing population of healthier older Americans is changing the way some medical centers choose recipients of organ donations. Debates are now brewing about who should receive vital organs and if age is a legitimate factor.

Many experts say these trends cannot be ignored. The graying population and revised policies determining who gets priority for donated organs have led to a rising proportion of older adults receiving transplants, The New York Times reports.

Joe Gammalo, 66, had been struggling with pulmonary fibrosis for more than a decade when he came to the Cleveland Clinic seeking a transplant four years ago. “It had gotten to the point where I was on oxygen all the time and in a wheelchair,” he told the Times‘ Paula Span. “I didn’t expect to live.”

Although lung transplants are difficult, often involving lifelong use of immunosuppressive drugs with high rates of side effects, the Clinic successfully performed the procedure. “It’s not like taking out an appendix,” said Dr. Marie Budev, the medical director of the Clinic’s lung transplant program.

Only about half of all lung recipients live for five years, she said, and most still die of their disease. The only treatment for pulmonary fibrosis, however, is a new set of lungs.

Some medical centers would have turned Gammalo away due to his age. Because survival rates are lower for the elderly, Span reports, “guidelines from the International Society for Heart and Lung Transplantation caution against lung transplants for those over 65, though they set no age limit.”

Still, the Society advises: “recognizing that advancing age alone in an otherwise acceptable candidate with few co-morbidities does not necessarily compromise successful transplant outcomes.”

Similarly, Judith Graham reported last April on the emerging trends associated with heart transplants. “Just a decade ago, people 65 and older were routinely rejected for heart transplants at all but a few institutions,” she wrote. But in 2006, the International Society for Heart and Lung Transplantation issued guidelines advising heart failure patients should be considered for transplants even up to age 70.

The new guidelines did not substantially increase the number of patients receiving heart transplants, however. Data from the Organ Procurement and Transplantation Network shows that in 2006, 243 patients ages 65 and older received new hearts. By 2011, there were 332 transplants.

Last year in the U.S., almost 16,000 kidney transplants, 6,000 liver transplants, 2,000 heart transplants and 2,000 lung transplants were performed. The majority going to individuals 50 to 64 years old. However, more than 1,500 individuals remained on the waiting list for lung transplants. Almost 3,000 adults were awaiting heart transplants.

So who should receive these rare organs? Some physicians, like Dr. Jeffrey Punch, chief of transplantation surgery at the University of Michigan, argue that the young should get priority.

“Personally, I think we should transplant 18 and younger and then address this issue of the young versus the old, taking care not to exclude older people but making sure that we put more emphasis on transplanting younger people,” he said.

Dr. Mandeep Mehra, executive director of the Center for Advanced Heart Disease at Brigham and Women’s Hospital, disagrees. ”Many of these older patients can transition to an even older age while maintaining a very good quality of life. Why would we deny someone that opportunity?”

Dr. Kevin Chan, transplant program medical director at the University of Michigan, posed this hypothetical: “What if there’s a 35-year-old on a ventilator who needs the lung just as much?” he asked. “Why should a 72-year-old possibly take away a lung from a 35-year-old?” But, he admits, “it’s easy to look at the statistics and say, ‘Give the lungs to younger patients.’ At the bedside, when you meet this patient and family, it’s a lot different.”

It is not as easy to receive an organ in the U.S. if you are 65 or older. Older individuals undergo physical and health screenings before being deemed eligible. They must have no chronic illness and the strength to complete post- surgery regimens. Then, they wait.

Differences between older and younger heart transplant patients are smaller when recipients are carefully chosen, according to researchers at Johns Hopkins University School of Medicine. After one year, 84 percent of heart transplant patients ages 60 and above survive, compared with 87 percent of younger patients. At five years, 69 percent of older patients survive, compared to the 75 percent of younger patients. The researchers suggest heart transplants not be restricted from patients based on age- so long as these encouraging statistics continue.

Learn more from the Life Matters Media Newswire:

Hospice enrollment policies contribute to underuse of care

Some doctors still believe in psychedelic drugs

Spirituality at end of life: Practitioners remain hesitant

January 6, 2013

Hospice enrollment policies contribute to underuse of care

Hospice enrollment policies contribute to the underuse of hospice care in the U.S., according to new findings published in the journal Health Affairs. Findings from the first national survey on hospice enrollment policies found 78 percent had at least one policy restricting care access for high-cost patients.

Although almost all Americans live within close proximity to a hospice, more than half of patients eligible for the care die without it. There are more than 3,500 hospice providers in the U.S.

Some 600 hospices were studied, and according to researchers, “patients with potentially high-cost medical care needs, such as chemotherapy or total parenteral nutrition,” had a greater likelihood of facing the restrictions. Limited enrollment policies were identified in both for-profit and nonprofit hospices. These restrictive policies include not receiving chemotherapy, total parenteral nutrition, blood transfusions, an intrathecal catheter, radiation therapy, tube feedings or requiring a primary caregiver at home.

“It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a palliative care researcher at the Mount Sinai School of Medicine.

The aim of hospice care is to manage the pain and symptoms of the terminally ill so that their last days are spent with dignity. The care is not intended to treat the disease. 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. Medicare states that to elect the Medicare hospice benefit, an individual “waives the right to receive all other Medicare covered services for the terminal illness and related conditions.”

Hospices may restrict access because of current Medicare reimbursements, which account for more than 80 percent of hospice revenue. The reimbursements do not cover treatments related to a patient’s terminal illness, so a hospice must pay for it. As Carlson points out, the average per diem reimbursement is only $140 per day.

The researchers explain, “many patients with terminal illnesses can benefit from using oral chemotherapy for palliative rather than curative purposes; radiation; or blood transfusions for treatment- or disease-related low blood cell counts.” Any one of these treatments can cost more than $10,000 a month.

Open access policies allow enrollment of those who are not yet eligible for the Medicare hospice benefit, anticipating that they will remain with the hospice when they do become eligible. Patients receive the medical comfort and social support available through hospice while simultaneously retaining access to medical treatments for their disease. Such patients may be covered by private insurance plans or pay for the care out of pocket. However, initial reports indicate that the cost of caring for patients enrolled through open access policies is generally absorbed by the hospice provider.

The authors conclude that increasing the hospice per diem rate for patients who require complex palliative treatments and removing the Medicare hospice benefit limitation on concurrent care may enable more hospices to expand their enrollment to patients who need and want it. Providing hospice services in a cost effective manner for those whose treatment plans include concurrent life-extending and palliative care is the subject of the a pilot project funded by section 3131 of the Affordable Care Act, although results for this pilot project are years from completion.

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December 4, 2012

What is palliative, hospice care?

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.

POS palliative care — Public Opinion Strategies

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.

POS political affiliation palliative care — Public Opinion Strategies

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.

Learn more from the Life Matters Media Newswire:

Occupational stress: Doctors may suffer when unable to save lives

Terminally ill opt for less treatment when in communication with doctors

Palliative visits provide welcome relief

November 29, 2012

Occupational stress: Doctors may suffer when unable to save lives

Physicians who treat the terminally ill may suffer from emotional stress when unable to save patients’ lives. Burnout and compassion fatigue are two serious forms of occupational stress physicians may suffer, according to research by Michael Kearney, M.D.

Kearney, a palliative care physician at Santa Barbara Cottage Hospital in California, describes burnout as “the end stage of stresses between the individual and the work environment.” Compassion fatigue is “secondary post-traumatic stress disorder, or vicarious traumatization — trauma suffered when someone close to you is suffering.”

Health care journalist Jane Brody addresses the stress and anxiety oncologists struggle with in a new article for The New York Times. Brody writes, “A doctor with compassion fatigue may avoid thoughts and feelings associated with a patient’s misery, become irritable and easily angered, and face physical and emotional distress when reminded of work with the dying.” Compassion fatigue may lead to burnout.

Up to 60 percent of practicing physicians report symptoms of burnout.

According to Brody: “Patients and families may not realize it, but doctors who care for people with incurable illness, and especially the terminally ill, often suffer with their patients. Unable to cope with their own feelings of frustration, failure and helplessness, doctors may react with anger, abruptness and avoidance.”

Physician suicide linked to occupational stress

According to Crystal Phend, senior staff writer for MedPage Today, ”Suicide among physicians appears to follow a different profile than in the general population, with a greater role played by job stress and mental health problems.”

Phend cites a study by Katherine J. Gold, M.D., of the University of Michigan in Ann Arbor, who found that problems with work were three times more likely to have contributed to a physician’s suicide than a nonphysician’s. Mental illness was also 34 percent more common before a suicide among physicians.

Up to 60 percent of practicing physicians report symptoms of burnout

“The results of this study paint a picture of the typical physician suicide victim that is substantially different from that of the nonphysician suicide victim in several important ways,” Gold wrote for General Hospital Psychiatry. ”Inadequate treatment and increased problems related to job stress may be potentially modifiable risk factors to reduce suicidal death among physicians.”

Although physicians have more access to health care, they may be reluctant to seek help. ”I think stigma about mental health is a huge part of the story. There is a belief that physicians should be able to avoid depression or just ‘get over it’ by themselves,” Gold wrote.

More than 200 of the 31,636 suicide victims reported in the National Violent Death Reporting System from 2003 to 2008 were physicians.

Meditation may help physicians

A 2008 study published by the Journal of Palliative Medicine, in which researchers studied 18 oncologists, found that physicians who viewed their work with patients as both biomedical and psychosocial found end of life more satisfying than those with a more biomedical perspective.

“Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end of life care, and an ability to positively influence patient and family coping with and acceptance of the dying process,” the researchers concluded.

“In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support.”

Kearney recommends “mindfulness meditation,” a Buddhist-influenced practice for physicians suffering from stress. “The doctor is able to recognize he’s being stressed, and it prevents him from invoking the survival defense mechanisms of fight (‘Let’s do another course of chemotherapy’), flight (‘There’s nothing more I can do for you — I’ll go get the chaplain’) and freeze (the doctor goes blank and does nothing).” He claims that even 8-10 minutes a day of “mindfulness meditation” can help.

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November 16, 2012

Beyond “The Sessions”: Intimacy at end of life

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.

Wagner has also shared thoughts on the critically acclaimed film “The Sessions” for Life Matters Media.

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September 28, 2012

Addressing the needs of ethnically diverse caregivers

Addressing the needs of racially and ethnically diverse family caregivers can help reduce the number of unnecessary hospitalizations and improve transitions between care settings, according to new findings by AARP. Researchers Susan C. Reinhard and Rita Choula analyzed qualitative data on Hispanic and African American caregivers in Meeting the Needs of Diverse Family Caregivers.

According to the AARP Public Policy Institute, one in ten caregivers in the U.S. in 2009 were Hispanic, and 11 percent were African American.

An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—like he was from the ‘hood.’

Hispanics told researchers that they always knew they would end up as family caregivers- a cultural tradition. “A number of Hispanic family caregivers said they started caregiving when they were very young. Many, particularly female caregivers, have had years of experience caring for their grandparents, parents, aunts, and uncles,” researchers write. Experience, however, does not make their job any easier, especially when many of the younger family caregivers work and have children of their own.

Language continues to be a barrier to effective communication in hospitals between caregivers and doctors. The researchers note, “In many instances the health care professional delegated responsibility for translating to the family caregiver, who might not have a good understanding of the information being translated in the first place.”

African American caregivers complained of feeling invisible in hospital settings. “Many felt ignored by the hospital staff. Some said doctors, nurses, and social workers often left them out of discussions about their family members, and it was sometimes difficult to get their questions answered,” the researchers write. It is imperative that caregivers remain informed in order to relate information to patients, who are often confused.

The lack of caregiver training can also harm their patients. “For example, family caregivers said they often did not receive sufficient training in administering injections,” the researchers found. “They also reported that they were not formally trained in other areas, such as how to move their family member from the bed to the bathroom, how to change an adult diaper, or how to get the care recipient to walk.”

The study also discovered that racial stereotyping in hospitals arose with disturbing frequency. Sometimes, African American caregivers felt like they had to prove themselves to doctors and hospital staff. “An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—”like he was from the ‘hood,’ ” according to the report.

The study also found that as part of the “new normal,” caregivers provide unpaid contributions of more than 450 billion dollars annually. “Family caregivers are assuming ever- increasing responsibilities for managing health care at a time when the older adult population in the United States is becoming more racially and ethnically diverse,” the researchers write. These responsibilities can include social work, nursing care, and some caregivers even act as patient navigators in hospital settings.

Many caregivers reported feeling unappreciated and ignored. “Despite deep personal and economic investments in the care of their family members, family caregivers report that they seem largely invisible to those who might be able to help them feel more respected and confident in providing care” the researchers write. “And, they say, rarely does anyone ask them how they are doing, what their needs are, and how those needs might be addressed.”

Similarly, The American Psychological Association found that ”Factors such as socio-economic status, familial interdependence, level of acculturation, immigration status, and fear of stigma in response to a disease or physical disability may influence minority group members’ experiences of caregiving.” The association concludes that healthcare professionals need to consider these differences.

Healthcare professionals must work to eliminate any tendency towards racial stereotyping, the APA writes, because stereotypes can lead to errors in judgment about minority groups.

“[B]ecause families of color are often stereotyped as being close-knit and supportive of their kin, social service agencies may not take the time to assess the actual needs of this population. This assumption may lead to less allocation of resources, manpower, and finances for outreach to those communities, which in turn, may help to perpetuate the misconception that they underutilize social services because they are taken care of by their own families,” the APA writes.

AARP researchers maintain that minority caregivers want to learn and will take advantage of available aid. “These family caregivers say they want resources to help them better care for their family members, not someone else to perform the tasks for them. They want more knowledge and confidence, and backup if they need more training and information,” they report concludes. They recommend a 24-hour hotline for caregiving support and training sessions to help family caregivers deliver better care.

Learn more from the Life Matters Media Newswire.

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Blacks continue end of life treatment when beyond recovery

August 30, 2012

Some doctors still believe in psychedelic drugs

Psychedelic drugs could prove beneficial to terminally ill patients suffering from anxiety and depression. The New York Times’ Lauren Slater outlines researchers’ optimism that such drugs can allay fears of death and dying. Psychedelics are undoubtedly controversial. The stain of the 1960s experimental phase remains with many American physicians, but some believe the drugs can help.

It’s been fifty years since many doctors became enamored with the drugs, known for causing hallucinations and vivid sensory experiences. The use of such psychedelics as LSD was skyrocketing. Slater writes how “psychedelics were embraced by many and used in a host of controversial studies, most famously the psilocybin project run by Timothy Leary.” President Richard Nixon called Leary “the most dangerous man in America.”

Researchers like Charles Grob, psychiatrist at Harbor-U.C.L.A. Medical Center, believe that drugs should be reconsidered as treatment options. Grob believes that a mystery remains surrounding drugs’ effectiveness against anxiety. “I don’t really have altogether a definitive answer as to why the drug eases the fear of death, but we do know that from time immemorial individuals who have transformative spiritual experiences come to a very different view of themselves and the world around them and thus are able to handle their own deaths differently.”

Psychedelic researcher Oliver Sacks recounts his own tumultuous relationship with the drugs for The New Yorker, describing his abuse of LSD and morning-glory seeds- and their inherent appeal.

He writes: “Many of us find Wordsworthian ‘intimations of immortality’ in nature, art, creative thinking, or religion; some people can reach transcendent states through meditation or similar trance-inducing techniques, or through prayer and spiritual exercises. But drugs offer a shortcut; they promise transcendence on demand. These shortcuts are possible because certain chemicals can directly stimulate complex brain functions.”

The transcendence would eventually help 55 year-old Pam Sakuda with her cancer diagnosis. “Shortly after having a tumor removed from her colon, she heard the doctor’s dreaded words: Stage 4; metastatic. Sakuda was given 6 to 14 months to live. Determined to slow her disease’s insidious course, she ran several miles every day, even during her grueling treatment regimens. By nature upbeat, articulate and dignified, Sakuda — who died in November 2006, outlasting everyone’s expectations by living for four years — was alarmed when anxiety and depression came to claim her after she passed the 14-month mark, her days darkening as she grew closer to her biological demise,” writes Leary.

She would take treatment from Grob. “As her fears intensified, Sakuda learned of a study being conducted by Charles Grob. . . who was administering psilocybin — an active component of magic mushrooms — to end-stage cancer patients to see if it could reduce their fear of death.”

Sakuda is quoted as saying, “I started to cry. . . . Everything was concentrated and came welling up and then . . . it started to dissipate, and I started to look at it differently. . . . I began to realize that all of this negative fear and guilt was such a hindrance . . . to making the most of and enjoying the healthy time that I’m having,” after the drugs.

“We may seek, too, a relaxing of inhibitions that makes it easier to bond with each other, or transports that make our consciousness of time and mortality easier to bear,” writes Sacks. Sakuda may have experienced her mortality in a different way, which was unique to her.

Researcher David Nutt, professor of neuropsychopharmacology at Imperial College London, told The Guardian: “Psychedelics change the brain in, perhaps, the most profound way of any drug, at least in terms of understanding consciousness and connectivity. Therefore we should be doing a lot more of this research.”

Learn more about psychedelics at NPR

Most want to live 80 years, no longer

For most, death may be an escape from end of life suffering than something to be avoided, research suggests. Life science reporter Ewing Duncan asked 30 thousand people how long they would like to live: 60 years, 80 years, 150 years or forever. Only 1% chose immortality, while most chose the current average- 80 years.

“Rarely, however, does anyone want to live forever, although abolishing disease and death from biological causes is a fervent hope for a small scattering of would-be immortals,” Duncan writes. Part of the reason most people would rather live a shorter life is because they don’t want to prolong old age.

Perhaps in the not-too-distant future, people may actually be able to choose immortality. Duncan writes: “Now scientists studying the intricacies of DNA and other molecular bio-dynamics may be poised to offer even more dramatic boosts to longevity. This comes not from setting out explicitly to conquer aging, which remains controversial in mainstream science, but from researchers developing new drugs and therapies for such maladies of growing old as heart disease and diabetes.” Living longer would be a symptom of these remedies.

Ironically, in 1900 the average lifespan was 47. Did people 100 years ago think the same?

Duncan’s new e-book is When I’m 164: The New Science of Radical Life Extension and What Happens If It Succeeds.

The article is available at The New York Times.

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