Tagged: Hospice

May 13, 2013

Pain should not be a symptom of aging, says Rainbow Hospice Medical Director

Pain in the absence of disease is not a normal symptom of aging, but is still a daily experience for many older adults, said Dr. Timothy McCurry, medical director of Rainbow Hospice and Palliative Care, at the 15th Annual Aging Well Conference in Evanston, IL.

“As we get older we get more diseases, so we have come to associate aging with pain,” McCurry told a room of seniors gathered at the Three Crowns Park retirement community. “Chronic pain is constant in a lot of people. The data shows 100 million people in the U.S. with such pain.” He suspects arthritis is the most common chronic disease.

Because chronic pain is episodic, clinicians should mind how patients’ pain changes throughout a week and over time. For example, patients suffering from arthritis can exercise to help reduce symptoms. McCurry recommends aerobic and strength regimens. “When you become weak, your muscles become vulnerable to injury- falling and breaking a hip.”

But exercise only does so much, as medication usually accompanies chronic pain. “Sometimes you have to make changes and take medications that are a little stronger, a little strange, but help you be able to do stuff,” said McCurry. He knows many choose not to take medications, and they subsequently become “used to pain.” These seniors have a higher risk of falling and a lesser quality of life.

Sometimes, those suffering from chronic pain hide their pain from clinicians, family and friends. Over time, these patients learn how to better mask their discomfort, unlike patients suffering from sudden and intense acute pain.

“We can help people in severe pain,” said McCurry, noting morphine and other opiodic drugs common throughout hospice. “No chronic patient should be in pain.” But some patients shy away from these treatments out of fear of addiction or social judgements. “Although these pain medications can help you function, these myths are very strong and very scary. But at the same time, the alternative is worse.”

Even though hospice care helps many manage pain, findings show most seniors utilize such care too late.

Buehler Enabling Garden, an outlet for aged and ill

The Buehler Enabling Garden at the Chicago Botanic Garden provides individuals of all life stages a place to explore nature and reflect.

About twenty miles north from the Chicago Loop, the Enabling Garden is just one portion of the nearly 400 acre living botanic museum. While the other reserves and bigger gardens require lots of walking and even some climbing, the Enabling Garden caters to seniors and to the ill.

“We try to make this area as accessible as possible,” said Julie McCaffrey, the garden’s media relations manager. Most of the flower beds are raised to both provide easy access to visitors in wheelchairs and so that the elderly do not have to bend down to smell the flowers. Hanging baskets can also be lowered by pulleys.

Less obvious accommodations include smooth paving for wheelchairs, vertical wall gardens and miniature raised water fountains for “sensory enjoyment.”

Guided rails help blind visitors plant — Guided rails help blind visitors feel where to plant

“Many of these same ideas can be adapted in home gardens to create enabling gardens for a lifetime of easy, enjoyable gardening,” the garden Web site states. McCaffrey said some of the hospice patients who visit are inspired to garden at home. “It gives them something to take care of,” she said.

Hospice Dreams, a nonprofit that grants wishes to some hospice patients, recently sent an individual to the Enabling Garden. “It is so therapeutic for them to interact with plants and be with family,” McCaffrey said. “It would be great if hospitals started recommending this garden to their patients.”

“Death denying” culture unfortunate result of medical innovation, says physician on Healthcare Decisions Day

Advances in medical therapies and technological innovation have led to a “death denying” culture pervading American health care, said Dr. Susie White, an emergency medicine physician at Provena St. Joseph Hospital, during a bioethics symposium at the University of Illinois-Chicago on National Health Care Decisions Day.

National Health Care Decisions Day aims to inspire and educate the public and medical providers about the importance of advance care planning.

White speaking to a room of medical providers, caregivers at symposium on NHCD Day

“Many older patients find themselves in a position they never thought they would find themselves in,” White said. “We have gained 30 years in our life expectancy.” Prior to antibiotics and modern therapies, most people died quickly- from infections, malnutrition or fevers.

Now, only 10 percent of Americans die sudden, unexpected deaths, and the sick and dying receive care in hospitals.

These shifts have fueled a “death denying” culture, one in which many wish to suppress or avoid any sign of aging or illness, White said. Families may grow angry at doctors- or even the patient- when treatments fail.

White maintains that palliative care can help patients and their families, and that the relatively recent medical specialty has the potential to reverse this culture of denial. “What we want to do is form a team of doctors, nurses, chaplains, anyone who might be helpful in an individual’s case and help anyone who has a life- limiting disease,” she said. “We want everyone in the family on the same page and smooth transitions.”

Most patients should not begin palliative care during the process of active dying, but rather, much earlier- even at the onset of illness, White said. “Palliative care is not hospice, but is an extra layer of support, that can go along with aggressive treatments,” she said.

The Integritas Institute for Ethics, a program of the John Paul II Newman Center, arranged the symposium, which explored the ethical challenges that arise at the end of life.

Learn more from the Life Matters Media Newswire:

Illinois POLST form released to public

POLST Illinois moves forward

The lack of advance care planning persists

February 15, 2013

Death Cafe: A movement discusses end-of-life

People across the nation are meeting for coffee to discuss death and dying.

Death Cafe, a growing movement that started in Europe, brings adults together to discuss death, dying and advance care planning over coffee.

The Death Cafe Web site states the goal of these cafes: “To increase awareness of death with a view to helping people make the most of their (finite) lives.”

Sociologist Bernard Crettaz, who started hosting the first “cafe mortals” in Switzerland in 2004, said that fellowship brings out truth. ”I am never so in tune with the truth as during one of these soirées. And I have the impression that the assembled company, for a moment, and thanks to death, is born into authenticity,” he wrote in “Cafés Mortels: Sortir la Mort du Silence.”

Six years later, Jon Underwood started the U.K. Death Cafe, after he read about the emergence of the cafes in Paris and decided to offer them himself, mostly in London.

Last year, the guide to hosting cafes encouraged Lizzy Miles, a 43-year-old hospice volunteer, to organize a cafe in Columbus, Ohio. She tries to keep the coffee and cake free, through fundraising and donations. Frank discussion then ensues with her guests.

“The goal is to raise death awareness with the view of helping people make the most of their lives. I’m really passionate about death,” she told The Huffington Post.

Nothing about death is too taboo for discussion. Wondering if cremation is better than burial? Ask. Struggling with an illness? Share your experiences. Even theological discussions are okay.

More recent cafes have emerged in Albuquerque, N.M.; Ann Arbor, Mich.; Belfast, Maine; Sonoma, Calif., and Chicago.

Elements, a cremation company based in Chicago, was inspired to start hosting cafes in the spring. “We realized the importance of opening up the conversation, and how simple conversations about our own demise are needed in our community,” legal counselor Ronette Leal McCarthy told LMM.

“We hope to offer a unique perspective to others that will help Death Cafe Chicago mature and offer insight on a topic many shy away from– death and all that surrounds it,” McCarthy said.

Learn more from the Life Matters Media Newswire:

Some doctors still believe in psychedelic drugs

Intimacy and end of life: “The Sessions”

Medical Marijuana: DEA continues to classify cannabis alongside heroin and LSD

January 28, 2013

Dying at home may be more difficult than expected

Extensive planning is necessary for those determined to help their loved ones die peacefully at home, health care reporter Susan Seliger writes for The New York Times’ blog on aging. Most Americans say they want to die say “at home” when asked, but both the patient and caregiver’s well being must be considered.

Investing in the right equipment and preparing documents may overwhelm some caregivers, and although professional help is available, each patient’s circumstances are different. Seliger has prepared a list of 12 tips to help them fulfill their final wishes.

Perhaps the most important consideration is making room for the bed. “A lot of people put the patient in a family room where there is more space, or the dining room if it’s closer to a bathroom,” said Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago. She also recommends putting the bed on the first floor of the home to prevent strenuous movements.

The pros and cons of using a hospital bed, Seliger says, should be carefully considered due to the emotional impact that sleeping apart from a spouse can bring. She advises patients with dementia or cancer who are not that mobile to choose a bed with an air compression mattress in order to to prevent bedsores.

Other suggestions are simple comfort adjustments, such as cushioning the patient’s favorite chair or buying earphones for the hearing impaired. Spring pressure adjustable curtains provide privacy.

Caregivers may also make use of hospice during the last stages of care. “A good hospice team not only helps the caregiver figure out a plan for care but arranges for Medicare approval and payment,” Seliger writes.

“The larger the hospice, usually the more services for the patient and caregiver,” said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at the Mount Sinai School of Medicine. ”Ask for their daily patient census – several hundred patients per day is a good size.”

“What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver — can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?” Morrison told Seliger.

“Respite care” for the caregiver may help with overwhelming stress. Respite care pays for up to five days of patient care in a nearby medical facility so the caregiver can take a break or even go on a vacation, said Lori Mulligan, senior director of development marketing and community services at Gilchrist Hospice.

Still, hospice care remains underutilized. As LMM previously reported, 36 percent of hospice patients die or are discharged within seven days of treatment. Many others suffer more than they need to due to hospice enrollment policies. 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.

Despite the work, home deaths may be less traumatic than hospital deaths, according to a 2010 study published in the Journal of Clinical Oncology. Some 300 adults with terminal cancer and the same number of caregivers were studied. Among the caregivers, those whose loved ones did not die at home were about five times more likely to have post-traumatic stress disorder after six months than those whose loved ones died at home.

Learn more about dying at home from WebMD.

Learn more from the Life Matters Media Newswire:

Some doctors still believe in psychedelic drugs

Organ transplants: Who should receive them?

January 24, 2013

“Consider the Conversation”: A discussion at Fourth Presbyterian Church

The acclaimed “Consider the Conversation: A Documentary on a Taboo Subject” was screened at Fourth Presbyterian Church in Chicago on Wednesday, in collaboration with the Chicago End-of-Life Care Coalition.

Directed by longtime friends Terry Kaldhusdal, a fourth grade teacher and filmmaker, and Michael Bernhagen, a hospice advocate, the film showcases interviews with health care professionals, religious leaders and the terminally ill in order to explain the importance of having the freedom to choose one’s end of life preferences. It also highlights the moral dilemmas surrounding the hastening of death, such as stopping eating and drinking, for those suffering and the artificial prolonging of life.

Loretta Downs, the CECC president, thanked the audience for being brave enough to watch such an emotionally evocative film. “Now we are living for years with chronic illnesses that before would have killed us. We think that we will never die, but we are required to talk about end of life,” said Downs, who is also featured in the documentary. “The film has inspired many people to have these conversations.”

The audience seemed to enjoy the film and engaged in a lively conversation afterwards. “I thought it was excellent, said Susan Thompson, 75. “It emphasized being natural in the most difficult moments of death and life.”

Downs acts out planning an advance care directive after film — Downs acts out planning an advance care directive with her colleague Daryl Isenberg, Ph.D., after the film for audience

Laura Pond, 54, said she did not like the film’s stance on hastened death. “I found it difficult to watch because I have a chronic illness and I thought people in the film were giving up,” she said. “You do not give up. It is not God’s plan.”

Marty Preiss, 60, said she found the film both compelling and engaging. She is planning a similar event for a screening at her church in Chicago’s northern suburbs.

The film has also been well received by health care professionals. “I have never recommended a film on the end of life before. But people deserve to see “Consider the Conversation” because it deepens our passion for life and enriches our lives,” wrote Compassion and Choices’ Barbara Coombs Lee.

“Consider the Conversation” has won multiple awards, including the Award of Excellence in End-of-Life Care from Agrace HospiceCare and the Silver Award of Excellence: Best Documentary or News Special from the Milwaukee Press Club.

Part two: “Consider the Conversation: A Documentary About Unintended Consequences” will be released early next year.

Learn more from the Life Matters Media Newswire:

Psychological responses to end of life

The Breakers offers advice for caring for elderly parents

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.

Learn more from the Life Matters Media Newswire:

The stresses of caring for an aged parent

Preventing falls among the elderly: Measure and reward patients

Seniors can stay in their own homes: Construction changes needed

December 28, 2012

Spirituality at end of life: Practitioners remain hesitant

Physicians and nurses at Boston medical centers cited a lack of training as the main reason why they rarely provided spiritual care for their terminally ill cancer patients, even though most patients considered it important to their end of life care.

A new study published in the Journal of Clinical Oncology reports that out of the 204 physicians from four medical centers who participated in the three year study, just 24 percent reported providing spiritual care. Among the 118 nurses, only 31 percent reported providing care.

“I was quite surprised that it was really just lack of training that dominated the reasons why,” senior author Dr. Tracy Balboni, an oncologist at the Dana-Farber Cancer Institute in Boston and researcher of spirituality, told Reuters Health.

Spiritual care may range from prayer with a physician or nurse to recommendations for a hospital chaplain.

Spiritual care “is considered by patients to be an important aspect of end of life care and is also associated with key patient outcomes, including patient quality of life, satisfaction with hospital care, increased hospice use, decreased aggressive medical interventions, and medical costs,” Balboni said.

Even though current palliative care guidelines encourage medical practitioners to mind religious and spiritual needs that arise during a patient’s end of life care, most medical practitioners remain silent. Ninety-four percent of patients with advanced cancer had never received any form of spiritual care from physicians.

Spiritual care may become more common in the future, however. “There was a time when nurses and physicians may have said, ‘That’s not my job,’ but I think the tides are changing,” said palliative care researcher Betty Ferrell of City of Hope, a cancer research center in Duarte, California.

“I think we are realizing we can no longer ignore this aspect of care,” Ferrell told Reuters. She’s a professor of nursing who was not involved in the new study.

Study researchers suggest more spiritual care training for physicians and nurses. The study found only 13 percent of doctors and nurses reported having such training. However, those who received training were almost 11 times more likely to provide spiritual care to their patients than those who had not.

Learn more from the Life Matters Media Newswire:

Beyond “The Sessions”: Intimacy at end of life

Catholic hospitals: Doctrine trumping patients’ wishes

Is hospice care really best?

December 18, 2012

Obesity and end of life: Weight affects care

As the U.S. continues to campaign against what some call “the obesity epidemic,” research shows that weight may affect the quality and costs of end of life care. By 2030, at least 60 percent of Americans in 13 states will be obese, according to the Centers for Disease Control.

Obesity’s effect on economics and health care

The CDC recently gave the nation an “F” for its obesity epidemic. More than 35 percent of adults and some 17 percent of children age 2 to 19 are obese.

Dr. Dean Griffin, Surgery Professor at LSU Health Shreveport, said as those numbers rise, costs of care rise and quality of care diminishes. “The cost goes up dramatically because these patients tend to stay in the hospital longer and because they have more complications, there are additional costs,” he told Louisiana’s KTBS. ”Surgery is much more difficult in patients who are overweight, that makes it very difficult, for example, to gain exposure.”

The CDC analysis found combined medical costs associated with treating preventable obesity-related diseases will increase between $48 billion and $66 billion per year in the U.S. by 2030. The loss in economic productivity could be as much as $580 billion annually by 2030.

Obese struggle with transitions from hospitals

Hospital case managers, nursing home and home care agency directors report patient size impacts transitions from hospital settings, according to a study by East Carolina University’s College of Nursing. This study is one of the few done on the issue.

“The increase in obese patients within the hospitalized patient population has become a challenge for nurses. Providing care for obese patients necessitates the use of assistive equipment and requires more staff members and more time for nursing procedures,” researchers explain.

Even home care is sometimes deemed inadequate for an obese patient due to lack of caregiver support or inappropriate facilities. Nursing home placement is often difficult for the obese due to the inability or unwillingness of some facilities to accommodate them. Patients can become “stranded in the hospital,” the report states, and “experience subsequent deterioration of vigor as well as increase in cost.”

Similarly, a recent study published in the Journal of Palliative Medicine determined obesity creates significant challenges to palliative medicine, leading to premature death and poor quality of life. U.K. researchers found privacy, handling and transfer to hospice more difficult for the obese.

Learn more from the Life Matters Media Newswire:

Some doctors still believe in psychedelic drugs

How POLST forms clarify wishes: Three scenarios

December 10, 2012

How POLST forms clarify wishes: Three scenarios

The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve end of life care in Illinois, is on its way to implementation. Health care professionals met at Rush University Medical Center this week to discuss the form’s development and strategies for raising public awareness.

Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center, provided the audience with hypothetical scenarios the POLST program form could remedy.

POLST program forms are more detailed than conventional living wills or other advance directives. They allow people to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for people who are likely in their last year of life. They can follow patients across in-state care settings and direct doctors to provide or withhold life-sustaining treatment in emergency situations.

The forms aim to more quickly direct doctors to a person’s wishes and eliminate confusion about what patients would want in the case that they are medically incapacitated and unable to communicate their wishes. The forms provide instructions in the case of a cardiopulmonary arrest (the person has no pulse and is not breathing), the degree of medical intervention they would want in a pre-arrest situation (the person has a pulse and/or is breathing), and whether or not they would want artificial nutrition if their medical illness prevented them from taking in adequate oral nutrition.

How a POLST form could help

A 67-year-old man is sent to the emergency room with chest pain and shortness of breath. He is also confused. The cardiologist says that a cardiac catheterization with angiogram and a stent are needed. The nurse tells the physician that there is a DNR order on his chart. Should the physician send the patient for an angiogram? It’s not clear.

If that patient had a POLST form that indicates DNR in case of full cardiac arrest but an order for full treatment in a pre-arrest emergency, the physician would immediately know what to do. The patient would be sent for the angiogram.

An 85-year-old man is admitted to the emergency room with severe pneumonia. He’s hypoxic, confused and refusing the ventilator. There is a DNR order on the charts. The physician feels that DNR doesn’t apply to this potentially reversible condition but the nurses disagree. He receives full resuscitation.

If that same patient had a POLST form indicating no CPR in the case of arrest and a preference for comfort care, the physician and nurses would have clear instructions. He would not have undergone full resuscitation, but would have been maintained in comfort with noninvasive maneuvers. .

A 59-year-old woman who is being treated for breast cancer is admitted to the emergency room for sepsis. She is transferred to intensive care and receives oxygen and maximum vasopressors. She has a DNR order on the charts. The staff are concerned that they are violating her wishes.

If she had a POLST form indicating no CPR in the case of arrest but limited interventions in addition to comfort measures, the staff may feel more comfortable treating her as they are doing and spend less time deliberating.

Continue reading →

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: