April 8, 2016
End of Life, Part 3
BY Mary Mahoney
This is the third part of a four-part series exploring end-of-life issues. Part I looked at how religion, cultural shifts and the doctor’s role influence attitudes and choices about death. Part II explored how and where people die and the controversy over physician-assisted suicide. This part covers options for end-of-life care, from assisted living to hospice. Part IV provides a guide to taking control over the last phases of life through health directives.
The only thing people dread more than death is ending up in “the old folks’ home.” Although end-of-life care has evolved in the last few decades, navigating the options has become more complicated. With millions more Americans living longer and the number of centenarians increasing tenfold by 2050, it’s time to pay attention.
The shift in demographics and the high cost of health care has made the United States a nation of caregivers. According to a study in collaboration with the AARP, the average American spends about 19 hours per week helping a sick, elderly or disabled person, and 21 percent of people in the U.S. act as unpaid caregivers to an adult.
When the caregiving burden becomes unmanageable, many look for outside help, especially those who care for seniors with dementia or terminal illnesses. When caregivers no longer can cope, such seniors may find themselves in a nursing home, hospice, assisted living facility or even a hospital intensive care unit.
The National Institute on Aging describes assisted living as a state-regulated facility that does not offer skilled nursing around the clock but does provide help with daily activities like bathing, dressing and taking medication. Assisted living patients live in apartments, often furnished with their own possessions. Such facilities may allow guests to stay over and offer memory care, While assisted-living facilities rarely take residents who are already bedridden, some may facilitate intensive medical care provided by outsiders in order to let patients “age in place.”
Nursing homes provide nursing staff and assistance for the elderly and anyone else who may need around-the-clock care. Some nursing homes are set up like hospitals, with doctors and nurses’ stations, and may offer physical, speech and occupational therapies. Some nursing homes try to be more like home.
Selecting end-of-life care involves lots of third-party research and personal investigation. Take a step back first and do a comprehensive checklist of important issues. The AARP caregivers guide suggests “35 questions to ask your aging parents,” including: “Do you have problems taking your meds? Can you always hear the telephone? Do you have a plan for paying present and future bills? How far away are your family members?” U.S. News features a yearly ranking of nursing homes, and the National Institutes of Health publishes extensive guidelines.
Hospice generally is described as a care model for the last six months of life, when there is little or no hope for a cure and the patient’s comfort becomes a priority. Palliative care can be given at any time during the course of an illness and in conjunction with curative and aggressive treatments.
According to the cancer.gov site, palliative-care specialists work as part of a team to relieve pain, fatigue and other symptoms. “Experts may provide counseling, recommend support groups and hold family meetings,” the website says. Palliative-care specialists even confer with patients about financial and legal questions and address spiritual concerns.
The National Academy of Sciences recently published a study highlighting the psychosocial needs of very ill patients called Cancer Care for the Whole Patient. A 2013 study in the New England Journal of Medicine concludes that “As in any medical discipline, some core elements of palliative care should be routine. Other skills are more complex and take years of training to learn and apply, such as negotiating a difficult family meeting, addressing veiled existential distress and managing refractory symptoms.”
At the Harvard Medical School Center for Palliative Care, for example, doctors can seek additional specialized training. The need is obvious. An NPR story on the shortage of palliative care states, “there’s only one specialist for every 20,000 older adults living with a severe chronic illness.”
In the face of a growing elderly population, the elder-care market also is expanding: There are now more niche communities and hybrid communities, like one in Florida geared towards NFL retirees, or one tailored for certain groups, notably including Indian-Americans.
Old age and retirement requires as much planning as any phase of life. At the same time, they can be totally unpredictable. When Washington Post columnist Art Buchwald became terminally ill, he spent time in hospice care. But as his condition improved, Medicare stopped paying. Instead of dying he lived another year, spending it by the ocean. In his book, “Too Soon to Say Goodbye,” he wrote of his experience: “In spite of the fact that I’ve been staying in a hospice, I’m not going to heaven immediately. My doctor informs me that I can stop over on Martha’s Vineyard on the way there.”