Tagged: illness

Psychological responses to end of life

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.

Learn more from the Life Matters Media Newswire:

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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.

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.

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

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Palliative visits provide welcome relief

Feeding tubes: Families struggle with the decision

Source: Brown University, Joan Teno

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.

Source: mercurynews.com

“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.

Learn more from the Life Matters Media Newswire:

“The Quality of Life”: The end of life played out on stage

Childless baby boomers plan for end of life care

Life Matters Media featured in The Huffington Post

Life Matters Media co-founder Mary F. Mulcahy, M.D., has shared her experiences treating the terminally ill for a new feature in The Huffington Post. She continues to spread the message of advance care planning.

“Advance care planning is a dynamic process that evolves over time as a person’s health goes from well, to ill, to ultimately terminal. Less than 10 percent of people will die suddenly; most of us will experience a protracted life-threatening illness. Medical advances have led to few cures of illness, have prolonged the experience of living with chronic illness and have prolonged the process of dying. Add to this the fact that for the next 18 years, baby boomers will be turning 65 at a rate of about 8,000 each day, and it is clear that the role of advance care planning needs to be embraced,” Mulcahy writes.

Learn more from the Life Matters Media Newswire.

Intimacy and end of life: “The Sessions”

Life Matters Media featured in Al Jazeera

End of life costing more than total assets of seniors

A quarter of Medicare recipients spend more than the total value of their assets on end of life care, according to a new study published by the Mount Sinai School of Medicine.

Deductibles, co-payments and home care are not covered by Medicare. “Prior to this study there was not a lot of data on the extent of out-of-pocket spending,” said study author Amy S. Kelley. “I think a lot of people will be surprised by how high these out-of-pocket costs are in the last years of life.”

The Washington Post / Wonkblog

The study relied on data from 2002-2008, which was collected from the Health and Retirement Study and supported by the National Institute on Aging and the Social Security Administration. Researchers used data on 26,000 Americans over the age of 50 and 3,209 Medicare recipients during their last five years of life.

The study found that 43% of Medicare recipients spend more than their total assets without the value of their home included. More than 75% of respondents paid at least $10,000 in out-of-pocket expenses for end of life care.

Patients suffering from dementia or mental illness often pay more for their care, because special living arrangements are needed. The amount of spending varied by diagnosis. Science Codex reports: ”Those with dementia or Alzheimer’s disease spent the most for health care, averaging $66,155, or more than twice that of patients with gastrointestinal disease or cancer, who spent an average of $31,069.”

The Washington Post / Wonkblog

The study concluded that the elderly patients facing end of life issues are at serious financial risk from health care related expenses. “A new generation of widows or widowers could face a sharply diminished financial future as they confront their recently-depleted nest egg following the illness and death of a spouse,” Kelley is quoted in The Washington Post.

Learn more about health care from the Life Matters Media Newswire.

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