Life Matters Media co-founder Mary F. Mulcahy, M.D., published her research about the racial and economic inequalities in the U.S. health care system for PBS. She continues to spread the message of advance care planning.
Mary F. Mulcahy
She writes:
“Racial disparities and inequities in American healthcare are evident in daily life, but regrettably they are also prominent in death. In these final days of Black History Month, it is imperative to reflect on the final days of all African-Americans and the choices they have within our health care system. These are the choices they aren’t taking, and the phenomenon serves as a means of further disenfranchisement from the medical community at large.
“The National Center for Health Statistics reports that African-Americans in home health care and nursing homes are half as likely as whites to have an advance directive, such as a living will or a do-not-resuscitate (DNR) order. This disparity leaves African-Americans at risk for unwanted medical procedures, unnecessary pain and family strife.”
Modern medicine allows the terminally ill to survive longer than ever, but debate continues about how much should be spent on aggressive end of life care and if such care is actually best for patients. TEDMED facilitated a live discussion about some possible solutions to these challenges with industry experts this week, as part of its Great Challenges series.
In 2010, Medicare paid $55 billion on 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. Some 20 to 30 percent of those medical expenses may have had no meaningful impact on the patients’ health, according to the analysis.
The discussion tied those problems to the need for better advance care planning and communication between doctor and patient. End of life concerns take an emotional toll on a patient’s family and friends, especially in the absence of advance care plans, such as a living will or POLST form.
Some families may insist on more aggressive care for the patient because of religious or societal expectations. Some doctors do not adequately communicate a patient’s condition to family, providing loved ones with the false sense that more treatment will work. This failed communication often results in increased spending.
Medical schools continue to improve training in how to listen to patients and mind the severity of illnesses, said Richard Payne, M.D., professor of medicine and divinity at Duke University. “Generally, there is much more emphasis now on teaching doctors to listen empathically to patients and their wishes,” he said.
Although it may be difficult and uncomfortable, it is important to speak with loved ones about death and dying ahead of time, said Bruce Jennings, director of bioethics at the Center for Humans and Nature. “Advance planning and treatment planning are very important aspects of ensuring that the kind of care you receive at the end of life will be beneficial for you, and will respect your wishes and dignity,” Jennings said.
Debate about end of life care will become increasingly common. In 2000, there were more than 35 million Americans 65 and older. By 2030, there will be 72 million.
As the U.S. continues to debate solutions to the problem of rising health care costs, TEDMED facilitated a live discussion about some possible answers with industry experts Thursday.
Kavita Patel, M.D.,former director of policy for the Office of Intergovernmental Affairs and Public Engagement for the White House, moderated the hour-long installment of TED’s Great Challenges program. The event streamed via YouTube.
Patel began by offering these statistics: ”In 1980, we had health care expenditures of $256 billion. In 2010, thirty years later, our health care expenditures were $2.6 trillion.” She then asked if the national health care system would benefit from physicians receiving standard reimbursements instead of fee-for-service payment.
Chapin White, a researcher for the Center for Studying Health System Change, provided an answer most doctors won’t like. “I think bringing physicians’ salaries down would certainly reduce health care spending,” White said, though noting that salaries are a small slice of overall costs.
Jeanne Stamper, a program director for Xerox Services, said we should be thinking more broadly.
“We see the trend now where a lot of physicians are giving up their private practices and going to work for these larger organizations,” Stamper explained. “So there’s a lot of change in the landscape of who’s getting paid.”
Anne Gauthier, senior program director at the National Academy for State Health Policy, said some physicians may rationalize more care to patients- regardless of that care’s usefulness.
“Physicians may have an incentive to repeat tests or to get their own information because it is not in one central place,” Gauthier explained.
“I think that we are deeply acculturated to ‘more is better.’ More medical care is necessarily better, and those who have studied this know this is not true.”
To view more in-depth analysis of this issue, some participants contributed written responses to questions from those who watched online.
For example, one TED community member asked how both doctors and patients could come to understand that doing less is often the best medicine.
Ron Pollack, J.D.,executive director for Families U.S.A., answered by highlighting estimates that one-third of care delivered in the U.S. does nothing to improve outcomes and may actually be harmful.
“Without a doubt, there is a great deal of overuse and misuse within our system,” Pollack wrote. He also emphasized the need to learn more about what the right care really is.
Stamper responded similarly, pointing to care at the end of life. “Often medical decisions conflict with the patient and family’s values – I want to die at home, I want to spend as much time with family as possible, I want to keep my loved one alive as long as possible.”
Overall, the experts agreed that an American cultural shift must begin towards discussing health care costs and the end of life sooner.
“I think that we are deeply acculturated to ‘more is better’,” Gauthier offered. “More medical care is necessarily better, and those who have studied this know this is not true.”
Although more affordable senior care services are emerging as the U.S. population continues to age, most still do not plan for end of life care, as The Associated Press’Matthew Perrone reports.
“Nobody wants to go to a nursing home, it’s the last resort,” James Firman, president of the National Council on Aging, told the AP. “People want to stay in their own home, and if they can’t, they want to go to a place where they can get assistance but that still feels homelike.”
Nursing homes continue to be the most intensive and expensive form of long-term care, which often includes 24-hour medical supervision, the AP reports. The average cost of a semi-private room in 2011 was $81,000, according to a survey by MetLife. A private room can cost more than $90,000, as the average daily rate for a private room in a nursing home rose more than 4 percent in 2011.
Most seniors will not require extended nursing home care. However, Medicare does not cover less intensive care options, such as in-home help with meals and chores.
“The issue is that these are long-term costs and almost all of it comes out of pocket,” said John Migliaccio, director of research for Metlife’s Mature Market Institute. “It’s important to have some idea about what it will cost dad, mom or your husband to get the care they need.” Only some 5 percent of adults have long-term care insurance to help pay for these services. Some policies can cost $8,000 a year.
“Advance care planning is a dynamic process that evolves over time as a person’s health goes from well, to ill, to ultimately terminal,” LMM co-founder Mary F. Mulcahy, M.D., wrote for The Huffington Post. “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.”
In 2000 there were more than 35 million Americans 65 and older. By 2030, there will be 72 million. According to the Georgetown University Public Policy Institute, almost 10 million seniors currently rely on others for daily care.
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. AsLMM 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 theJournal 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.
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 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.
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.
A panel of health care and financial experts provided end of life planning advice to a packed room of seniors at The Breakers at Edgewater Beach Wednesday. The event served adult children caring for aging parents and seniors beginning to make end of life plans.
Dr. Leslie K. Eldridge, the executive director of the senior living facility, hosted the event and questioned the panel, which included Julie Fohrman from North Shore Geriatric Care Management and Kathy Sprau of Sprau Advocate Group.
Most questions pertained to changes the Affordable Care Act will usher in during 2014 and Medicare benefits. Eldridge acknowledged that she hears a story of someone working in crisis mode every day due to lack of planning and understanding of current policies.
“This is a topic that is on everyone’s mind these days,” said Sprau. ”There are so many questions and I think it is incredibly difficult to find information. You have the Internet and I don’t know if people know to go there.”
The audience was clearly engaged and would have asked questions for hours if allowed. The Breakers is planning another event in the coming months.
Victor Schwartz, 86, said he thought the event was very informative. “People always have these questions about how they protect their grandmother, their mother or someone that they have very close ties with.”
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
‘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.
As more than 76 million baby boomers approach retirement age, some have had to become caregivers for parents and sidestep vacation and retirement plans. Advances in medical technology have allowed the elderly to live longer than ever, so now many boomers must adjust.
According to data from the National Alliance for Caregiving, some 66 million Americans are unpaid family caregivers. Two-thirds of those caregivers are female, and most are around 48-years-old. Fourteen percent simultaneously care for their own child.
In 2009, AARP estimated the economic value of their unpaid contributions was approximately $450 billion, as many provide care for more than 40 hours a week.
Rerouted lives
CNN recently published a feature on adults with rerouted lives due to caregiving responsibilities. Karen Jones, 61, a retiree from Virginia Beach, Virginia, is one such individual. ”I never thought I would be doing this,” Jones said. She takes care of her parents, both in their 90s, who live down the street.
“Travel plans now include very expensive trip insurance so I can rush back to take care of them,” she said. “An extended trip to Scotland to visit my husband’s relatives has been put off twice because it’s hard to leave my parents for a month at a time.”
She has no siblings nearby and has had a strained relationship with her parents. Jones said she’s cleaning up her karma and “putting old hurts to right.”
Megan K. McAvoyexplained in a new article forThe Huffington Post that caring for parents is “a labor of love,” because women must carve out time between getting kids to sports practice, succeeding career-wise and putting dinner on the table.
Some women experience loneliness and isolation caused by the emotions involved in caring for a parent. Seeing a parent ingest high doses of medications, making decisions with siblings, working and financial costs take a serious toll on the caregiver.
According to McAvoy: “The compound physical and emotional impact of caregiving over a lifetime results in a large percentage of women who need care themselves. Yet, nearly half of women ages 75 or older are living alone, compared to less than one-quarter of men. The challenge becomes finding the resources to get care for yourself after you have given it for so long.”
McAvoy, a financial representative, advises families to have early conversations about caregiving and long-term care insurance, although such insurance won’t replace loved ones.
So why do so many children choose to become caregivers? Ellen Breslau, editor-in-chief and senior vice president of Grandparents.com, insiststhat many children take upon the caregiving role because it offers peace of mind. ”They will naturally feel more comfortable with you than with non-family members, which can impact the caregiving and their well-being.”
“It is also a time to give back to your parents in a way that is unique,” she told CNN. “They raised you and cared for you, and now the cycle has come full circle to a point where you can do the same for them.”
