The entire lifespan of most African Americans is consumed by efforts to overcome obstacles, inequality, and in many cases, institutional racism.
The most difficult point in this most tiring journey is often the end-of-life. For the disproportionate number of us is when death is accompanied by the dilemmas around how we choose to die.
Hospice; Palliative Care; Advance Directives; and Compet-ency become terms that we, or our loved ones, all of a sudden are faced with and expected to deal with.
Studies and observations show that, likewise disproportionately, we are not prepared for this final stage of life.
What we know is that African Americans are less likely than any other group to be prepared for end-of-life, and not surprisingly, are less likely to have a prepared Advance directive.
First, let’s talk about Advanced Directives. This is the document that should be prepared to outline, in detail, what type of care (if any) we desire as our lives come to an end, and we are not able to make decisions for ourselves.
An Advanced Directive includes things that typically are not even thought about during times when life is good.
Generally, it will include things such as a living will or do-not-resuscitate order, or in identification of a health care surrogate. Regrettably, it’s not until we are in a hospital ICU; Hospice Center; or even on Home Hospice that we (or our loved ones) are confronted with having to make difficult decisions, while dealing with imminent death.
In spite of the fact that studies show that 80 percent of Americans would prefer to die at home, the reality is that 60 percent of us will die in a hospital; 20 percent of us will die in a nursing home; and only 20 percent will end up in a situation where we will be able to make our transition in the comfort and peace of our own home.
If you are not competent, or capable, to make medical decisions but do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made.
In 2013, The Pew Foundation did a study and found that while 73 percent of all Americans have given “some thought” to end-of-life, only 37 percent of African Americans have done the same. This means that doctors and others on the care team of a terminally-ill patient may decide to continue providing care and treatment, when you may feel that your loved one has had enough, and should be allowed to die in peace, with dignity. In the absence of an Advance Directive, this could become a point of contention, and the patient is caught in the middle. Or, it could be the other way around, you may feel that there is still hope for a recovery, and the doctors feel that there isn’t. Again, the patient lies there in limbo, and often suffering unnecessarily. For African Americans, it’s worse. One study found that only 13 percent of all African Americans have an Advance Directive in place.
It can be a difficult, and often, an uncomfortable conversation, but collectively, we have to begin to have conversations during the “good” times in life with our families and loved ones about what we do and don’t want should we ever find ourselves in a position where we are unable to make medical decisions for ourselves.
Think about how often we attend funerals, and families are still reeling over how things came to an end with conflict and contention between families of a patient who died, and the medical staff at the hospital. Think about how different it would be if we made our wishes known, before something happened unexpectedly.
A few things that may be helpful for you in getting an Advance Directive for yourself:
First you need to familiarize yourself with the term: life-sustaining treatments. Nolo’s Plain-English Law Dictionary defines this as “Medical procedures that would only prolong the process of dying or sustain a condition of permanent unconsciousness. A patient who is receiving life-sustaining treatment will die soon, whether or not treatment is administered. Life-sustaining treatment may include a respirator, cardiopulmonary resuscitation (CPR), dialysis, surgery, and other medical procedures.” Would you want any of these? If so, under what circumstances?
Most importantly, let your loved ones know what you have in your Advance Directive. People only like surprises for their birthdays. Don’t wait for them to find out at an emotionally difficult time, when they are grappling with the inevitability of your death.
You don’t need a lawyer to create your Advance Directive. But you do need to make sure you understand the laws of the state you live in regarding Advance Directives. Some states have restrictions that you need to be aware of that may prohibit your wishes.
When Clyde Earle checked into a hospital expecting to return home, his doctor, Kathy Selvaggi, had to deliver some bad news. Our film “Being Mortal” explores issues of death, aging, and what is important in the last days of life.
But we learn early on that despite the fact our lives are universally finite, most people don’t want to talk about it.
We’ll talk sex, we’ll talk drugs, we’ll even talk money—but not death.
That could be changing with the proliferation of so-called Death Cafes, informal get-togethers in cities across America, Europe and Asia, where people eat a little something, drink some coffee maybe and talk about, well, the inevitable.
The mission is to revamp typically depressing and urgent end-of-life discussions to more leisurely “Everything-I-Wanted-To-Know-About-Death-But-Was-Afraid-To-Ask.”
The conversation ranges, and depends on the group of people who’ve gathered: anything from how much a funeral costs to the details of a “green” funeral (think: corpse as compost) to tips on how to talk to your family members about your own funeral.
There’s a range of people who attend, too, from someone who had a death in the family and wants to be better prepared next time, to health care providers who want a different perspective on dealing with death. They range in age from 20-somethings to 90-somethings.
The object: to turn death from a feared end to something that is part of life.
“Death Cafés change the way you live in the most profound and wonderful way,” says Kim Mooney, 67, who runs monthly meetings in Longmont, Colorado.
Mooney even held a few events in a mortuary. “I like to say it’s the only time you will walk in and walk out of one, so you might as well take advantage of it.”
Death café hosts tend to have a sense of humor.
Death on twitter
If you want to confirm the popularity of the death positive movement, just go on social media. There’s The Death Café Facebook group, which lists times and dates of meeting and has more than 50,000 likes and followers.
Advocates say the meetings allow people a low-pressure way to express fears about the Great Unknown; to chat about the way other cultures handle death; and to share practical information, such as learning the nuts and bolts of filling out end-of-life forms.
Talking with strangers, hosts say, is often an easier way to broach the topic before launching a conversation about death with loved ones.
Lizzy Miles is a hospice social worker who hosted America’s first café in 2012 in Westerville, Ohio. She baked cookies in the shape of tombstones with grey icing and “Death Café” where the epitaph normally goes.
She is one of more than a 100 Death Café hosts in this country. She’s still hosting—and still making treats—for nearly a dozen people who show up each month.
“No one ever comes to a Death Café already uncomfortable talking about death,” she says. “If you are, you’re not going to come. We have a lot of sandwich generation people, who are taking care of their parents.”
Miles is so committed she even traveled to a Death Café in Hong Kong—“on my own dime!”—to see what it was like.
“It was amazing, people were speaking English and Mandarin and Cantonese,” she says. “And I thought ‘Oh my gosh, all these different languages. This is pretty cool but almost exactly the same.’”
Do: Allow a space for folks to share their ideas respectfully and openly.
Do: Offer the opportunity for everyone to speak but allow those who want to remain silent to do so.
Don’t: Charge an admission fee.
Don’t: Sell death-related products.
Don’t: Turn the group into grief support.
Miles and others believe that confronting our mortality will prompt us to the make the sorts of life changes that some folks do only when confronted with a fatal disease. Why wait?
Shellie Balogh, a 61-year-old hospice nurse attended one of Miles’ cafés in Ohio.
“It wasn’t what I expected; it was more upbeat,” she says. “It’s a fun thing to do if I have a free Saturday. You go and meet people you may never see again and just have this conversation, opening up this forbidden area of discussion.”
A midwife for dying
Suzanne O’Brien hosts a New York City group that meets at a public library on the Upper West side. She’s a nurse turned death doula.
Death doulas—part of this burgeoning “death-positive” movement—provide the same sort of bedside care, comfort and companionship that birth doulas offer to pregnant women but at the other end of the life cycle.
O’Brien said monthly conversations tend to fit into five buckets, sometimes all five covered in one 90-minute session:
The physical: How do I make sure I’m comfortable during my dying hours. What do I want to happen to my body?
The financial: What forms do I need to fill out? Or how much money do I want to spend on a funeral versus, say, end-of-life care?
The emotional: How do we deal with potential regrets or forgiveness?
The mental: Reasoning and acceptance
The spiritual: How do beliefs about death inform the way we live.
One woman wanted to know how to donate her body to a medical school anatomy class. She also wanted to make sure her family would not be given the leftovers when the students are done picking her apart, something she had heard can happen.
She told the group: “I’d rather just be flushed.”
Banishing the secrecy
The idea of a group of a random community members chatting about death over refreshments was the brainchild of Swiss sociologist Bernard Crettaz. He launched a “Café Mortel” in 2004 in the lakeside town of Neuchâtel, Switzerland. A dozen mortal members attended.
The point, as he once told a reporter for the Independent, a British newspaper, was to remove death talk from its “tyrannical secrecy.”
The first cafe outside of Switzerland was held by John Underwood, who hosted in his London basement in 2011. He’s given credit for helping the movement go global; he died last year, at the age of 44, from undiagnosed leukemia.
Today, there are death-with-food meetings in about 55 countries—including the U.K., Italy, Hong Kong, Finland, the Netherlands and New Zealand.
Becoming a regular
Those who are regulars say that while the subject matter is death, the meetings are not sad. Hosts emphasize that they are not grief support groups, more death-curious groups.
Jane Geller, a retired schoolteacher in New York City attends the Upper West Side meeting nearly every month.
“It’s a misnomer to think it’s depressing,” she said. “Death Cafés are really about life.”
Shatzi Weisberger, an 88-year-old retired nurse from New York City is a regular, too.
“I was always especially interested in how we come into this world and how we leave it. When I got into my eighties, I got personally interested for my own edification.”
Last fall, she hosted her own “FUN-eral” (pronounced Funn-eral) in the common room of her apartment building. More than 100 attendees came to the event. It sounded like a macrabe-themed birthday but she said it was a death, not a birth, party. And a way to attend her own funeral.
She said she has planned her own green burial. “I’m going to be wrapped in a shroud and buried in the woods upstate and my body will deteriorate and something will grow. I don’t know if it will be grass or flowers or a tree so I feel my dying is bringing life into the world. That’s not depressing at all.”
When most of us go online to our internet banking account and set up a direct debit to pay a bill, we probably do it swiftly without much thought. But in reality it’s not that easy. In fact, there are a lot of complex processes involved in how we manage our finances, which older people, especially those with dementia, often struggle to deal with.
Dementia affects an estimated 850,000 in the UK, with numbers expected to rise to over a million in the next few years. Each year, dementia care is costing £26.3 billion in the UK alone. Most of this involves care in nursing homes and supporting people with dementia with their daily activities.
If we look at the whole raft of daily activities a person does, such as preparing a hot drink or a meal, or doing the laundry, financial management is one of the earliest tasks to deteriorate in dementia. These processes are complex, which is why people with dementia often struggle to count change, use a cash machine, pay bills or manage tax records sometimes even before their diagnosis.
Daily activities as a whole are often underpinned by a complex network of cognition. This can include different types of memory for past and future events, so the need to remember to do a task at 8pm tonight for example, involves problem solving skills, and attention. But there are other factors that can hinder someone when performing a task, such as motor problems or their environment.
In a recent analysis of a large data set collected from 34 clinical centres across the US, my colleagues and I looked at what kinds of behaviour are a warning sign for problems with paying bills and managing taxes in people with dementia.
When we obtained the data set, we only looked at people with dementia living in the community, who also had a family caregiver, and a diagnosis of the three dementia subtypes: Alzheimer’s disease, behavioural-variant fronto-temporal dementia, and Lewy body dementia. We then performed an analysis using statistical models to help identify the degree to which certain factors – such as language or motor skills – can predict a particular outcome. In this case, paying bills was the outcome for one model, and managing taxes was the outcome for the second model.
We found that between 11% and 14% of the ability to manage those financial tasks is predicted by executive functioning, or problem solving skills, language, and motor problems. So this means, if a person has problems solving difficult tasks, problems with language, they fall frequently and are moving slowly, and are also more likely to also struggle with financial tasks. Slowness and falls are particularly prominent in people with Lewy body dementia, which is different to Alzheimer’s disease, the most common form of dementia.
This knowledge can help people with dementia. Older people, including people with dementia, can often be subject to financial exploitation. This can be through online or telephone scamming, or knocking on someone’s door trying to sell something. And when people with dementia struggle using internet or telephone banking, they may be more prone to telling strangers their bank details.
One way to support people in managing their finances may be to provide training to improve their cognition. It’s important to bear in mind that dementia is neurodegenerative. So while we can help people maintain certain skills for longer, there will come a point where full support for finance tasks is needed. This could involve arranging a lasting power of attorney and naming a person that is trusted to look after financial decisions.
Another way may be to adapt the homes of people with dementia to avoid falls and allow them to move around more freely. In our analysis, we found that falls were linked to poor finance management, meaning that noticing your loved one fall more frequently than usual could be a warning sign that they may also struggle managing their finances. If we can drag out the need for full support for as long as possible, we can help someone stay in their own home for longer. And that is exactly where people feel the happiest.
Other, larger financial questions loom for people with dementia, such as inheritance and dealing with payments for formal care – both at home and in future in a nursing home. These are big financial concerns, which should be discussed once a diagnosis is made, but ideally done before. That way the person is better able to judge what they think should be done with their money, and is less likely to be financially exploited than in the later stages of the condition. The Alzheimer’s Society has also produced some good further guidelines on how to deal with financial abuse in dementia.
While it may be the last thing someone wants to think about who has just received a diagnosis, the best way to avoid financial abuse is to put things in place right away. If that isn’t motivation enough, staying independent in all sorts of activities improves well-being. And that is our ultimate goal, whether we have dementia or not.
From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.
Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.
You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.
Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.
But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.
Making plans for the end of life is important, but it’s a topic a lot of people tend to avoid. In fact, surveys show that some 60 percent of Americans lack a will or estate plan.
Yet, if you were to ask, most of them would assure you they want to care for their family after they die. They want to safeguard the assets they’ve carefully built over the years, keep them in the family, and make sure Uncle Sam doesn’t take the lion’s share.
How do you find out if your own parents have taken care of their plans? Adult children find it challenging to talk with their parents about such things. The subject can be sensitive and emotional. You may worry about appearing self-serving. Yet, it’s important for you to have such details so that you can be better prepared.
Here are some ways to make the topic easier to broach.
1. Watch for off-handed cues, such as your father mentioning his mortality or the reference to having attended a friend’s funeral. This is an opportunity to mention that as much as you don’t want to think about it, you want to respect their wishes, should a critical health situation come into play. Do they have an advance directive and power of attorney? Tell them you need to know in order to help carry out their wishes.
2. Ask your parents for advice on your own estate plan. Inquire as to how they have handled their own will or trust, and open with such questions as, “Who is on your team of professionals for your estate?” Refer to having reviewed your life insurance policy to make sure your beneficiaries are current and ask if they have checked theirs lately to make sure their beneficiaries are up to date.
3. Set an appointment to talk with your parents. If an opening does not come up to talk about this casually, set a time with them to discuss it. Let them know this meeting is about making sure their wishes for the future are respected. When you meet, assure them that you don’t want to guess about their desires and have some questions that address some delicate but important areas.
Once the door opens for you to talk with them about this, be sure you don’t shut it quickly. Assure them you have asked for this conversation in order to make sure they are well taken care of.
Once you begin exploring the details, don’t put your parents on the defensive. Asking why your parents have decided certain things the way they have can cause sensitivity. Instead, as they share information, mirror this back to them so that they feel heard.
An example would be, “What I hear you saying, Mom, is that you prefer to be cremated rather than buried, is that right?” Take it slow, allow them to express feelings about the choices they have made for their future. If they are reticent to talk about money, tell them numbers are not important – you just want to make sure they have planned well for what lies ahead.
If you can set the stage for an honest and candid discussion, be sure you include addressing the following four things: (1) A will or trust with a coordinated estate plan; (2) an advance health care directive; (3) a durable power of attorney; and (4) a list of assets and where they store important documents you might need when the time comes.
One by one, their names were recited as family members clutched one another’s hands and silently wept.
Seventeen men and women had died within the past year at Gray Health & Rehabilitation, a 58-bed nursing home. Today, their lives were being honored and the losses experienced by those who cared for them recognized.
Death and its companion, grief, have a profound presence in long-term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months.
But the tides of emotion that ripple through these institutions are rarely openly acknowledged.
“Long-term care administrators view death as something that might upset residents,” said Dr. Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. “So, when someone passes away, doors are closed and the body is wheeled discretely out the back on a gurney. It’s like that person never existed.”
At Gray Health’s memorial service on this warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. “Our loved ones continue to live on in the memories in your hearts,” Rev. Steve Johnson, pastor of Bradley Baptist Church, said from a podium.
Dozens of family members gathered outside, each holding a white balloon. At the count of three came the release. Cries of “I love you” echoed as the group turned their faces to the sky.
Miles wants to see bereavement openly acknowledged at facilities throughout Georgia to end what she calls “the silence surrounding loss and death in long-term care.” Following in-depth discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on “best practices in bereavement care” and is gearing up to offer educational seminars and staff training in dozens of nursing homes and assisted living residences across the state.
“Dr. Miles’ work is incredibly important” and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.
Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing and burnout.
Joanne Braswell, director of social services at Gray Health, remembers a resident with intellectual disabilities who would stay in Braswell’s office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.
“One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn’t,” Braswell recalled, reflecting on her shock, made more painful by memories of her daughter’s untimely death several years earlier. “I promised myself never again to [become] attached to anyone like that.” Since then, when residents are actively dying, “I find myself pulling away,” she said.
Sylvia McCoullough, 56, came to Gray Health’s memorial ceremony for her father, Melvin Daniels, who died on April 19 at age 84.
Two years earlier, not long before her mother passed away, McCoullough had realized that her father had dementia. “He was the strong one in our family. … He always took care of us,” she said, explaining that her father’s confusion and hallucinations shook her to her foundation.
“I cry all the time,” McCoullough continued, looking distressed. “It’s like I’m lost without my mom and dad.” But Gray’s ceremony, she said, brought some comfort.
Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.
“I love to recall all the people that have passed away through the year,” said Williams, who sends sympathy cards to family members every time she learns of a fellow resident’s death. On these occasions, Williams said, she’s deeply affected. “I go to my room” and “shed my own private tears” and feel “sadness for what the family has yet to go through,” she said.
Chap Nelson, Gray Health’s administrator, has instituted several policies that Miles’ bereavement guide recommends as best practices. All staff members are taught what to do when a resident dies. When possible, they’re encouraged to attend the off-site funerals. Every death is acknowledged inside the building, rather than hidden away.
If one of his staff members seems distressed, “I go out and find them and talk to them and ask how I can help them with the feelings they may be having,” Nelson said.
Other best practices include offering support to grieving residents and relatives of the deceased, recognizing residents’ bereavement needs in care plans, and having a protocol to prepare bodies for final viewing.
Some facilities go further and create unique rituals. In one Georgia nursing home, staff members’ hands are rubbed with essential oils after a resident’s death, Miles said. In Ontario, Canada, St. Joseph’s Health Centre Guelph holds a “blessing ritual” in the rooms where people pass away.
Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.
“We don’t talk about it enough when someone passes here; we don’t have a formal way of expressing grief as a community,” Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. “There are things I think we could do better.”
When a death occurs at this continuing care retirement community, an electric candle is lit in the parlor, where people go to pick up their mail. If there’s an obituary, it’s placed in a meditation room, often with a sign-in book in which people can write comments.
Since working with Miles, Rockenbach has a keener appreciation for the impact of death and loss. He’s now considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”
Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of one resident, in his 90s, with whom she had grown close.
“Me and him, we were two peas in a pod,” she said, recalling the man’s warmth and sense of humor.
Over time, the old man confided in the nurse that he was tired of living but holding on because he didn’t want family members to suffer. “He would tell me all kinds of things he didn’t want his family to worry about,” Jackson said. “In a way, I became his friend, his nurse and his confidante, all in one.”
One morning, she found his room was bare: He’d died the night before, but no one had thought to call her. Jackson’s eyes filled with tears as she recalled her hurt. “I’m a praying person, and I had to ask God to see me through it,” she said. “I found comfort in knowing he knew I genuinely loved him.”
Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson’s disease, had recently moved to Carlyle Place’s assisted living section from their independent-living apartment— signaling the end of their time living together.
Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago after her first husband had died. “Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse,” Peak said. “Once you’re here, loss — either your own or someone else’s — is around you continually.”
She found herself turning to David, whose first wife had died of a brain tumor and whom she describes as a “soft, sweet, wise man.” Before they married, they talked openly about what lay ahead, and Peak promised she would carry on.
“No one can stop the heartache that accompanies loss,” but “my friends and family still need me,” she said.
In late May, David sustained a severe head injury after falling and died. “I miss him greatly as we were very happy together,” Peak wrote in an email. “I am doing as well as I can.”