Tagged: pain

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.

Life Matters Media featured in The DePaulia

Life Matters Media’s Daniel Gaitan shared his thoughts on the Oscar-nominated “Amour” and the importance of advance care planning in The DePaulia.

‘Amour’: Discussing death and dying

How do you care for a suffering loved one? “Amour,” the sublime French-language nominee for best picture directed by Michael Haneke, encourages discussion surrounding the end-of-life by highlighting the pain one aged couple faces navigating caregiving, medical treatments and death.

Amour’s first scene takes place in an elegant Parisian apartment. Firefighters bash in the doors and cover their noses from the smell of human decay. They proceed to the bedroom, only to find a woman’s corpse wreathed in carefully arranged flowers. The rest of the film is flashback.

The apartment belongs to Georges and Anne, a posh couple in their eighties who care deeply for each other. They have been married for decades and are finally enjoying the rewards of having lived successful music careers. However one morning, Anne (Emmanuelle Riva) goes into a catatonic state during breakfast. This state triggers a flurry of health problems, including paralysis. Georges (Jean-Louis Trintignant) dutifully does the best he can to care for her. He promised he would not put her in a nursing home or let her die in a hospital. The film suggests they do not have advance care directives, a living will or power of attorney. If they did, the film would have ended much differently.

Planning for the end of life

Advance care planning involves learning about the types of decisions that need to be made in case of a medical crisis and aims to ensure an individual’s desires are carried out.

One common form of planning is a living will, a written document that tells doctors how a patient wants to be treated if incapable of making decisions about emergency treatment, according to the National Institute on Aging. A power of attorney is a legal document that names a healthcare proxy, someone to make medical decisions on behalf of a patient unable to do so.

Read the rest at The DePaulia.

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Hospice enrollment policies contribute to underuse of care

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.

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November 27, 2012

Terminally ill opt for less treatment when in communication with doctors

Cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, according to a new study published in the Journal of Clinical Oncology. Instead, these patients end life more comfortably at home or in hospice care, and as a result spend much less on hospital care.

“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said Dr. Jennifer Mack, lead author of “Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study.”

“We should at least consider having these discussions soon after diagnosis if we know that a patient has incurable cancer,” Mack, from the Dana-Farber Cancer Institute in Boston, told Reuters Health.

The researchers studied more than 1,200 patients with stage IV lung or colorectal cancer who survived at least one month from the time of diagnosis, but died during the 15-month study period. Using interviews of the patients and/or their caregivers and a comprehensive medical record review, the researchers determined if and when the patients had discussions with their doctors about end of life.

Researchers found that 88 percent had end of life discussions, but more than one-third of those took place less than a month before the patient died. Those patients who had end of life discussions documented in the medical record but did not recall them in the patient or surrogate interviews were more likely to have chemotherapy within the last 14 days of life, or acute intensive or hospital care within the last 30 days of life.

Patients who reported having the discussions with doctors were almost seven times more likely to end up in hospice than those who didn’t have those talks. Hospice focuses on comfort care and pain management for terminal patients, instead of treatment.

“A lot of patients don’t want (aggressive treatment), but they don’t recognize that they’re dying or that this is relevant for them,” said Dr. Camilla Zimmermann, head of the palliative care program at University Health Network in Toronto. She wasn’t involved in the study.

She told Reuters: “The earlier you discuss these things, the more options you have. If you wait too long, you end up having these discussions with someone you don’t know, that you just met, in an inpatient setting,” instead of with your primary doctor.

According to Mack, ”If we start these conversations early, then patients have some time to process this information, to think about what’s important to them (and) to talk with their families about that.”

In 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives- more than the budget for the Department of Homeland Security, according to CBS News. Twenty to 30 percent of those medical expenses may have had no meaningful impact on the patients’ health.

Reuters is reporting data from the Dartmouth Atlas of Health Care, which found that 32 percent of total Medicare spending goes to caring for sick patients in their last two years of life.

National guidelines recommend patient-physician talks begin soon after a terminal cancer diagnosis. Researchers found that physicians initiated end of life discussions an average 33 days before death.

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Feeding tubes: Families struggle with the decision

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November 24, 2012

Feeding tubes: Families struggle with the decision

Many families caring for seniors with advanced neurological disease face this dilemma: prolong their loved one’s life by artificial means via a feeding tube or stop feeding them altogether. Lisa Krieger’s new feature for Mercury News focuses on the billion-dollar feeding tube business and why some families regret their decision to opt for artificial nutrition.

One-third of nursing home residents suffering from dementia receive tube feedings, contributing to the $1.64 billion industry. However, some families and physicians insist the value of feeding tubes is overrated, since they provide little medical benefit and increase pain for those suffering from progressive neurological disease.

“The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states,” Krieger reports. The only comprehensive study on the matter found the average rate of use nationwide was 54 per 1,000 people.

Racial minorities are also more likely to opt for artificial tubes than whites. Life Matters Media previously reported that blacks are twice as likely than others to choose aggressive end of life treatments.

As medical costs continue to rise and the baby boomer population ages, views on artificial nutrition may be changing. “Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying,” Krieger writes.

For example, a 1999 study by Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolong the lives of demented nursing home patients. They also didn’t prevent pneumonia or improve comfort.

Finucane’s analysis asserts: “We found no data to suggest that tube feeding improves any of these clinically important outcomes and some data to suggest that it does not… risks are substantial. The widespread practice of tube feeding should be carefully reconsidered…”

Most families, however, are accustomed to caring for their sick by feeding them, a reason why the decision to opt for or against artificial nutrition is especially emotional. “Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion,” Krieger writes.

Sometimes a terminally ill individual may not feel pain when a feeding tube is first inserted in the stomach. As the illness progresses and pain begins to get more intense, removing the tube becomes a moral debate. This quandary often comes as another surprise for families.

“It is amazing how long you can keep someone alive,” said Dr. Leslie Foote, medical director of Windsor Gardens Rehabilitation Center in California. “But we sure aren’t doing them any great favors.”

Despite some change in public opinion, families may not have the choice to reject feeding tubes. The fallout from the controversial 2005 Terri Schiavo case led the Catholic Church to order doctors at its hospitals to ignore patients’ advanced directives- even if they do not want artificial feeding. Catholic hospitals may mandate artificial nourishment.

In 2009, the U.S. Conference of Catholic Bishops issued the directive to more than 1,000 Catholic hospitals and nursing homes, as well as to all Catholic doctors.

“People with end stage dementia still possess human dignity. And that dignity must be respected,” said Vice- President of Corporate Ethics at Catholic Daughters of Charity Health System Gerald Coleman. Krieger insists that tube feeding constitutes ordinary care at Catholic hospitals.

Learn more about feeding tubes at WebMD.

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August 24, 2012

Parents prolong child suffering in hopes of miracles

Some parents resolve to prolong their dying child’s life in hopes of miraculous healing, despite doctor concerns and the child’s well being. The Journal of Medical Ethics has published findings by British doctors who analyzed cases at Great Ormond Street Hospital involving end of life decisions for children over a three-year period. Out of 203 cases, 186 of them involved parents who took medical advice to end treatment. The remaining 17 cases include 11 (65%) in which parents held out for miracles.

Religious preferences of the parents included Christian fundamentalism, Roman Catholicism, Judaism and Islam. According to CBS News, “In five of the 11 cases, parents were finally convinced to terminate unnecessary care after religious leaders from outside the hospital were called in to help counsel the parties.”

The U.K.’s Mail reports that the doctors of the study “say it is time to review the current ethics and legality of cases where the methods are counter-productive.” The doctors also ”argue that when children are too young to be able to actively subscribe to their parents’ religious beliefs, a default position in which parental religion is not the determining factor might be more appropriate.”

The doctors cite Article 3 of the Human Rights Act, which says, “No one shall be subjected to torture or to inhuman or degrading treatment or punishment.” The doctors believe “Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitized by a carer or relative,” is a violation of the Act.

In an accompanying editorial for the Journal, editor Professor Julian Savulescu wrote: “A better ethical ground for withholding or withdrawing life-prolonging treatment is not that it is in the interests of the patient to die, but rather on grounds of the limitation of resources and the requirements of distributive justice. Put simply, not all treatment that might be in a person’s interests must ethically be provided.”

Dr. Arthur Caplan, who leads the division of medical ethics for NYU Langone Medical Center, told ABC News, ”You have to take beliefs into account but you can’t let any parent for any reason hijack what you as a doctor believe is in the child’s best interest.” He also said, “If you think what they want will cause pain and suffering and further treatment is pointless, a doctor should not do it even if the parents say Jesus spoke to them.”

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