The gift of life comes with just one guarantee: that it will end. Somewhere in the fine print of our genetic code is an expiration date. We pass away, become no more, snuff it, give up the ghost, cease to be, bite the dust, kick the bucket, buy the farm, turn out the lights, draw a terminal breath and shuffle off this mortal coil to join the choir invisible.
We die, and our inclination to discuss it euphemistically or in the abstract has less to do with Monty Python than with the actual subject matter – it’s just so grim.
“The topic of death is still sort of taboo. We’re afraid to talk about it,” says Anne Glass, assistant director of the Institute of Gerontology in The University of Georgia’s College of Public Health.
“But death is an actual, natural part of life,” Glass says. “And it would be helpful if we talked about it before something happens. Then it might not be so scary when the time comes, when we’re called upon to help a family member or friend, to be involved in their care.”
That call becomes increasingly likely with every passing year as the Baby Boom population rushes into dotage. Every few seconds another person turns 50. More than two thirds of the people in history who have reached 65 are alive today, and by 2030 the number of older Americans will double compared with 2000, representing about 20 percent of the total population.
We live longer, healthier lives than ever before, but nearly all of the elderly encounter severe illness at the end of life, spending two or more final years disabled enough to require assistance with even the most routine activities of daily existence.
“Even though most people say they’d like to die in their sleep at home, surrounded by family and friends, the reality is most people, more than 75 percent, die in a hospital or nursing home,” Glass says. “And about 90 percent will die after a period of decline because of a chronic condition.”
Meanwhile, about half of Americans die in pain that could have been treated; and the seriously ill have come to fear losing their dignity more than losing their lives.
And death never discriminates based on age. A prolonged end-of-life scenario is populated by young and old. Either way, we don’t die particularly well in this country. A little talk and proactive planning can go a long way. But the all too typical silence and typically American repression can have a dreadful price.
“In our house we didn’t think or speak about death. The last stages of my parents’ lives were veiled in secrecy. There were no conversations,” says Bonnie Salamon, president, chairman and founder (with her husband Steve) of AgeLess, an Atlanta-based nonprofit educational corporation that promotes lifelong productivity and independence.
“My mother had cancer for many years and didn’t know it because they wouldn’t tell her,” Salamon says. “My father and uncles decided not to tell my sister and I until we were each married, and my mother wound up outliving my father, who died of a heart attack.
“There were no discussions, no goodbyes,” she continues. “Consequently, we were left with a lot of fear and misunderstanding.”
In addition to the emotional toll that death-denial and poor (or no) planning can take on families, there is the expensive impact on the workplace.
As workers age, concerns about childcare are eclipsed by worries about ailing parents and loved ones. About 44 million Americans care for an adult (18 or over) family member or friend. Most are from working families.
Almost 170,000 employees leave the workplace each year as a result of caregiving demands, according to a study released last summer by the MetLife Mature Market Institute and the National Alliance for Caregiving. The average employee with intense caregiving responsibility costs a company almost $2,500 annually, and the overall cost to U.S. business from lost productivity of working caregivers ranges from $17.1 billion to $33.6 billion.
And while an increasing number of employers are finding it in their enlightened self-interest to implement elder care programs for employees as part of the benefits package, the Georgia and national health-care system will be pushed to unprecedented limits as more people require end-of-life care.
Such care is becoming more expensive as the availability of caregivers and public funding dwindles. And the challenge is compounded in a U.S. health system that is concentrated overwhelmingly on acute care, but often lacks the capacity to care effectively for the chronically ill of any age at the end of life.
Adapting to 21st century demographic changes will require health-care providers and patients to see end-of-life care in new ways, and it starts with the conversation nobody wants to have.
“It should not be up to patients and families to bring this conversation up; it sits squarely on the shoulders of health-care professionals to become skilled in the discussion,” says Kathy Kinlaw, executive director of the Health Care Ethics Consortium of Georgia and acting director of the Center for Ethics at Emory University.
“A number of schools are beginning to focus on helping physicians and nurses think about how they communicate effectively with patients and families, to help them think about palliative and end-of-life care conversations, to bring these things up earlier, and not put them off until a few days before a person dies. We need to shift our way of thinking.”
And to put down what we are thinking on paper in the form of an advance directive – a legal expression of a patient’s wishes, how he is to be treated if seriously ill and, if he’s unable to speak, specifying a surrogate decision-maker. Advance directives have traditionally taken the form of a living will, durable power of attorney or durable power of attorney for health care. It sounds fairly simple, but to advocates for the elderly and end-of-life care, it often feels like pulling teeth with needle-nose pliers.
“The public puts its head in the sand when it comes to aging issues, and that includes elders. They don’t want to admit the inevitable, and plan ahead,” says attorney Wally Kelleman, a former nurse, now managing director of Georgia ElderCare Insurance and a practicing attorney whose Kelleman Law Firm specializes in representing the elderly.
“Even the medical establishment is afraid to talk about death,” she says. “I was a critical care nurse, and it was always, ‘Everything will be OK.’ A lot of denial. Now I’m trying to get the message out about the advance directive.”
Kelleman, a driving force of the Georgia Elder Care Network (www.georgiaeldercarenetwork.com) has an innate interest in the elderly. She grew up in a foster home with older caregivers. “They were in their 50s when I was three, so I was never afraid of old people. It was a natural progression for me, becoming an elder law attorney and advocating on behalf of a population that is largely ignored,” she says.
“And you know, the aging population is big business, but I can’t say that the quality we offer them is very good. Georgia law says there is the need for only two hours of hands on care in a nursing home facility. Really? You take an elder with Alzheimer’s, who can do nothing for herself, and you tell me how her hands-on needs can be met in two hours?
“We do not revere our elders, we do not take care of people at the end of life, so I fight to keep them out of institutions.”
Advance directives were a hot topic during this year’s legislative session. State Rep. Steve Tumlin introduced House Bill 24, designed to simplify the process by combining the living will and durable power of attorney in order to offer a clearer picture, reflective of current choices in clinical practice, for physicians and families. Kinlaw and a cross-section of interested parties helped create the legislation.
“There was room for improvement; we did away with contradictory witnessing requirements and tried to establish a more user-friendly process,” Kinlaw says.
Georgia already is one of many states that have adopted the “Five Wishes” document as a legal form of advance directive. Developed by Jim Towey, who was Mother Teresa’s legal counsel, the document uses forms that are simple, easy-to-understand and direct, taking into account a person’s medical, personal, emotional and spiritual needs.
Advanced directives can help a family plan for the inevitable – address personal needs and desires, help remove emotional burdens when tough choices are impending and prevent families from financial ruin.
Health-care expenses are the leading cause of bankruptcy, even among people who have insurance; and it’s been estimated that, if everyone had an advance directive, it would save almost $2 billion a year in personal health-care expenses.
Even so, these documents should not be carved in stone. Paperwork should obviously be altered to reflect changes of heart and circumstances.
“It’s a flawed concept that advance directives will accurately reflect a person’s wishes at the stage of need, so it’s important to revisit the document on a regular basis, and particularly if you receive diagnosis of a major illness,” Kinlaw says. “These documents are best used as catalysts for conversation.”
The cost of living an extra year is consuming a larger chunk of our national health-care resources. A graph of health-care expenditures over a lifetime describes mostly level terrain until the last year of life, when the costs climb dramatically. In Georgia, the average cost of doctor and hospital care over the last six months of life is $15,077 – below the national average of $16,776.
Medicare covers 83 percent of all who die in the United States. Each year, about 27 percent of Medicare’s $327 billion budget payments go toward the 6 percent of beneficiaries who die that year. Researchers have spent a lot of time and money trying to find out if it’s money well spent, and how best to leverage limited public funds.
A study released last year by Dartmouth Medical School revealed that Medicare could cut its spending on chronic conditions by one-third through lower utilization of acute care hospitals. But the study also showed that care of chronic illness accounts for more than 75 percent of all U.S. health-care expenditures, indicating that the system as a whole lacks efficient, effective ways of caring for people with chronic illnesses.
“The emphasis in training health-care providers is on making people better, solving their problems,” says Glass, whose primary research has focused on care in the last years of life, with the hopes of improving end-of-life care. “You can’t solve a chronic problem – you can help manage it. As a system we haven’t been geared that way.
“But with our growing older population, chronic care is becoming essential, and a lot of what health care is going to become will be about managing those chronic conditions.”
The health-care system already has moved in that direction with the growing acceptance and use of hospice and palliative care.
Hospice is a model of compassionate care for people in the last phase of an incurable condition, in which health-care personnel provide a team-oriented approach, providing pain management and tailoring emotional and spiritual support to comply with a patient’s and family’s wishes.
Palliative care is the treatment of symptoms and side effects, as well as psychological, social and spiritual problems related to the disease or its treatment.
“The need has always been there for palliative care,” says Dr. Mark Johnson, director of the Emory Hospital Medicine Unit, who launched a palliative care service in 2005. “But physicians weren’t trained in it. That’s beginning to change. We have developed better medicines, we can manage pain and relieve symptoms better, and the concept has exploded in popularity among patients and community health systems.”
A patient need not be terminally ill to receive palliative care, but palliative care is integral to hospice. A patient with a life expectancy of six months or less may be referred to hospice, a model of care that can be provided anywhere, including a patient’s home or a hospice facility.
Since 1983, Medicare has included hospice as part of its benefits. The service can be provided with no cost to the patient. For patients under 65, health insurance plans and long term care insurance generally cover the tab. There were about 30 hospices around the country in 1983. There are about 4,200 today, but it remains one of the most underutilized Medicare benefits, with about 30 percent of Medicare recipients using it, and those who do use it generally wait until the last minute, after they and their families have endured much pain and suffering.
“We know that most people want to die at home, or surrounded by loved ones in a comforting, nurturing environment, and that’s what hospice provides,” says Mike Smajd, executive director of Columbus Hospice and president of the Georgia Hospice and Palliative Care Organi-zation (www.ghpco.org). “But we tend to shy away from hospice. There is this aversion, a mindset in society, that we are the angels of death.”
In fact, hospices like the one in Columbus, or the growing number of similar services provided by traditional health-care organizations like WellStar, are angels of mercy. Hospice is not a death sentence – a patient can leave hospice care and elect to return to more aggressive treatments.
But the heart of hospice is the belief that everyone has the right to die pain-free, with dignity and the relief of knowing that loved ones will receive care and support throughout the process.
“There is this misconception about palliative care and hospice, that you’re inviting death in,” says Dr. Melissa Mahoney, co-director of the Emory palliative care program. “But that’s not it. When the time is right, it’s right. Choosing hospice means that you understand the end is near, and you want it to make it the best possible ending.”