I live in a world filled with grief. My work dictates that I see it every day.
Grief is not universally the same for everyone. Professionally, I have observed that it is uniquely coded into a survivor’s collective history. It is personal with recovery predicated upon one’s abilities, strategies, and skills.
Although some would have you believe it is depression, ADHD, PTSD, a personality disorder, or some other pathological condition, it is not. It is a normal and natural reaction, albeit painful, to significant loss. It carries emotional, physical, and psychological consequences through interference into one’s comfort and health by reducing abilities to concentrate, sleep, and eat. It decreases one’s tolerance levels and coping skills and evokes fear in a multitude of facets. It imposes loneliness, creates insecurity, causes significant and immediate lifestyle changes, and at times catapults one into dire straits. In short, grief is a foe whose significance is based on the survivor’s reliance, depth of love, and/or responsibilities toward the deceased. It is the ultimate adversary to harmonious living. Additionally, one should not treat grief as a pathological condition through self-medicating or prescription drugs as these will only mask the pain, inviting illness to set in and disease to take hold.
Lack of resolution carries extreme consequences. If a survivor has compromised health or engages in a prescribed medical treatment for illness or disease, he/she would be well advised to avoid interference in their regime. A study of widowed persons found that the overall death rate for the surviving spouse doubled in the first week following the loss. Additionally, heart attacks more than doubled for male survivors and more than tripled for female survivors. Overall, surviving spouses were 93 percent more likely to get into fatal auto accidents and their suicide rate increased by 242 percent. (Mortality after Bereavement: A Prospective Study of 95,647 Widowed Persons, American Journal of Public Health 1987)
According to the US Census Bureau (USCB), 13 million survivors enter grief annually. Many of them suffer the pain of grief for 10 to 40 years. If grief-stricken survivors stack up over an average of 25 years, the number increases to 260 million suffering within the US borders. That is 80 percent of America’s population. “Thousands of mental health professionals report that although their clients come to them with other presenting issues, almost all of them have unresolved grief as their underlying problem.” (The Grief Recovery Method, Guide for Loss)
Unfortunately, many confuse Elizabeth Kubler-Ross’ study, a.k.a. “Kubler-Ross Model” on death and dying as the “Recovery Road Map” for survivors. The confusion lies in that her study concentrated on the stages of grief suffered by dying persons. She does not apply her findings to the survivor’s experience of recovery. In the blink of an eye, the survivor is faced with a very different scenario of life. He/she must instantly face the financial, physical, emotional, psychological, and spiritual realities and adjustments of survival after loss. The senseless association of the Kubler-Ross Model as grief recovery by universities and media has led to misinformation and confusion for those suffering grief.
To recover from grief, one must travel through it; not dance around it. We need smaller experiences of loss through earlier years from which to draw. The loss of a favorite toy, the death of a pet, or relocating and making new friends all serve as foundational experiences to prepare us for the ultimate loss of our loved ones. Unfortunately, society has robbed us of many of these foundational losses and recovery experiences. Many have never learned good sportsmanship by experiencing the disappointments of defeat while playing ball against their schoolmates as children. Others have never had to overcome relationship disappointments, as their friends are virtual rather than actual. The point is that our society is ill-prepared for the pain associated with loss. We live in a pseudo-reality filled with desensitizing scenarios of death. At some juncture, however, reality comes our way. One day, we will look at our electronics and feel-good scenarios and realize that whether we are prepared for it or not, we will participate in life based on the terms set forth by eternal laws of truth. That is the day that you will receive an unwelcome wake-up call into the pitfalls of adult realities, responsibilities, and crushing grief.
Do yourself a favor. Put down the electronics, the virtual realities, and the hyped up desensitizing entertainment programs sensationalizing violence and mass death. Doing so will allow you to experience life as it should be, with real joy, real fulfillment, and the ability to achieve meaningful recovery.
What happens when seniors who can’t recognize their own kids try to navigate the hazards of physical intimacy with one another? Zosia Bielski looks at the challenges for elderly people, nursing homes and families
By Zosia Bielski
When Karen Best abruptly lost her communications job at the age of 57, her family found it strange: she’d been a workaholic all her life. For a while, they assumed she was depressed, as she whiled away the hours watching cat videos online in her housecoat.
Within the year, Ms. Best was diagnosed with early-onset Alzheimer’s and frontotemporal dementia. By the time her family placed her in long-term care in Welland, Ont., Ms. Best had stopped calling her grandchildren by their names and lost most of her language. Staff would ask if she wanted a blueberry or a chocolate-chip muffin; she couldn’t reply.
Which made the phone call from the nursing home one month into Ms. Best’s stay all the more alarming: caregivers were anxious about her and a male resident. Staff needed her daughter, Cassandra Trach, to come in right away. “She had been found with no pants on, and he had no pants on, in his room,” said Ms. Trach, a 33-year-old account executive in the Niagara region. “This was something I was wholly unprepared for.”
Ms. Best and the elderly man would walk together, holding hands, and she would also seek him out for closer contact, according to staff. Like her, he was able-bodied but suffering from dementia. Ms. Best and her new companion were also both married – in Ms. Best’s case, for three decades – but had seemingly forgotten their spouses.
Every time nursing-home employees discovered the couple undressed together, they’d call Ms. Trach and her father, who jointly possess power of attorney for Ms. Best. “It felt like they wanted us to decide, do we let this relationship go and happen, or do we try to redirect?” Ms. Trach said. “It’s so grey. What do I do?”
For Ms. Trach, it was a painful predicament. Could her mother – an advanced dementia patient who sometimes couldn’t communicate what she wanted for breakfast – meaningfully consent to a new sexual relationship? Dementia had rendered most of her thoughts inscrutable, her desires opaque. Who could tell if she wanted or understood this?
Amid ever-widening cultural conversations about sexual consent, dementia remains uncharted territory. As Canadians live longer, more are moving into long-term care with advancing dementia disorders. It’s a growing population with complex needs, not least of all in their intimate lives.
In the close-quarters environment of nursing homes, these people’s sexuality poses difficult ethical dilemmas for staff and for families. Those who care for uniquely vulnerable dementia patients walk a fine tightrope. They have to protect their residents from sexual abuse while respecting their needs for human connection – and a private life.
This is proving challenging for Canadian caregivers. There is no unified strategy on sexuality and dementia in this country. No cognitive test exists to determine, once and for all, whether a person with Alzheimer’s can consent to sex or not.
Instead, nursing-home employees are often left on their own to decide whether their residents with dementia can consent to intimacy safely – even as residents’ awareness shifts from moment to moment, their speech recedes and their thoughts become difficult to access.
When poorly trained staffers are left to untangle such ethical knots, they can bring their own value judgments to bear. A prevailing squeamishness about elder sex can provoke alarmist reactions. The result is great inconsistency around dementia patients’ sexual lives in long-term care across Canada, a point that troubles Alzheimer’s advocates.
“It’s all over the map,” said Judith Wahl, a Toronto legal consultant who fielded complaints about homes for three decades as executive director of the Advocacy Centre for the Elderly and now educates long-term care staff across the country about consent and dementia.
In interviews, more than a dozen sources detailed questionable attitudes on the ground.
They described personal support workers seemingly making up policy on the fly, with some barring any kind of touch between residents, and others not paying close enough attention to their most defenceless patients and those who might exploit them.
“Homes should put their minds to looking at how they manage this,” Ms. Wahl said. “It’s really hard to do this well.”
Consent and capacity
Despite an ever-widening social reckoning around sexual consent, dementia presents a new frontier.
Just 28 per cent of Canadians fully understand what consent entails, according to research conducted earlier this year by The Canadian Women’s Foundation. Consent becomes decidedly more complicated when one or both people involved have dementia.
Just as a person’s sexual consent can quickly swing from “yes” to “no” during an intimate encounter, so can dementia patients’ abilities to recognize and navigate what’s happening around them.
“Consent is so challenging,” said Mary Schulz, director of education at the Alzheimer Society of Canada. “It’s a moving target. Our instruments for assessing that are quite blunt.”
The starting point is Canada’s sexual-consent law, which is no different for people living with dementia than it is for anybody else. The Criminal Code is clear: Consent can be spoken or unspoken, but it needs to be affirmative and happen in the moment; passivity cannot be construed as a “yes,” and nobody can consent (or dissent) on anyone else’s behalf, not even with power of attorney.
“With medical treatment, if you’re not competent, [the decision goes] to somebody else on the hierarchy – often a family member,” said Jane Meadus, a lawyer with the Advocacy Centre for the Elderly. “With sex, you can’t do that.”
Although the law is clear, it’s not always helpful within the context of nursing homes. Who determines “capacity to consent to sex” is not readily established in Canada. Often, it falls to personal-support workers to resolve the most critical questions: Do their residents with dementia understand what they’re doing, including the consequences? Can they pull back at any time?
With little consent training, staff aren’t always equipped to answer with full certainty.
Deepening the dilemma is the contradictory nature of the nursing home. These places are supposed to serve as patients’ homes, where they’d normally enjoy a private life. At the same time, these are highly monitored environments where every risk is mitigated. Caregivers have to prioritize safety and dignity simultaneously.
“They’re in a bind, because we’re not really good at telling them how to do that,” Ms. Meadus said.
At long-term care homes in most provinces, residents now have a “bill of rights” that allows them to receive visitors of their choice in private. Ontario and Prince Edward Island spell out residents’ rights to form relationships in care, even letting friendly residents share rooms. “Residents are treated with respect and dignity at all times, including during intimacy,” reads Nova Scotia’s patient bill of rights, the only document to use the word directly.
These philosophies represent a stark evolution from the oppressive old-age institutions of the past. But, even as residents’ rights are increasingly protected on paper, what happens on the ground doesn’t necessarily follow.
“It gets extremely tricky,” Ms. Meadus said. “You get some homes that have tried in the past to say, ‘Nobody can have sex, that’s it.’ And you get other homes where it’s laissez-faire: ‘As long as it feels good, they can do it.’ It is a very difficult balance that people are trying at, but we haven’t got it right yet.”
Advocates voiced concern about caregivers overstepping. They described religious staff members taking moral exception to LGBTQ patients and to residents having extramarital liaisons. They spoke of homes that have operated as “no sex zones,” where caregivers overzealous about their duty to protect patients have dissuaded them from engaging in all touch with one another, right down to holding hands. Staffers are afraid that such simple, comforting gestures might spiral into sexual abuse and liability.
They’ve got some cause for concern. Long-term care is one of the most highly regulated sectors in Canadian health care. Homes track everything and must report sexual abuse to their provincial ministries of health and long-term care, and to police. Ministries will cite homes if staff members fail to protect their residents from harm. Families of residents can also sue a home for damages; these cases are overwhelmingly settled out of court.
“The default position for long-term care staff – not necessarily rightly, but quite understandably – is in case of doubt, nobody touches, nobody hold hands, nobody is allowed to have sex,” said Ms. Schulz of the Alzheimer Society of Canada. “They go to that extreme position because they’re at a loss. But that is denying a person their human experience, which is just not on.”
On the other end of the spectrum, employees at more progressive homes don’t always consider the sexual risks as closely as they should, some legal advocates say. Ms. Wahl said she’s dealt with too many complaints about employees looking the other away, assuming the affection between two residents is mutual when it might not be. “Just because somebody’s old,” she said, “doesn’t mean that you just ignore the fact they could be sexually assaulted.”
Ms. Wahl rattles off what she’s seen. Some staffers will decide that a resident is seeking out sex because he or she walked into another resident’s room – this even as clinicians know that dementia patients often wander without aim. Other caregivers mistakenly assume that sex between a resident and visiting spouse is automatically consensual. This disregards Canada’s 1983 marital-rape law, which makes clear that even those married for decades need to get agreement from each other before having sex.
Ms. Wahl is most perturbed by family members infantilizing their elders. She said she’s seen many adult sons and daughters objecting to parents forming relationships in care. Sometimes, Ms. Wahl said, staffers hand over the sexual decision-making to these family members, assuming it’s the right thing to do because they have power of attorney.
“You can’t have substitute consent to sex,” Ms. Wahl cautioned, pointing to Canada’s sexual-assault laws.
Adult children can be the strictest gatekeepers. Many will try to stymie their parents’ late-in-life
relationships, lawyers and Alzheimer’s advocates say.
Children are rightly protective, but many are also simply recoiling from their parents’ sex lives.
“Unnerving” was the word Ms. Trach used as she fielded call after call about her mother being found undressed again with her new boyfriend at the nursing home in Welland. “What am I supposed to do with this information?” Ms. Trach asked, exasperated.
Even though staff reported that her mother encouraged the intimate relations, Ms. Trach was distressed. She wondered about her mom’s motivations for pursuing the man.
“Is she consenting to it because, like a teenage girl, she’s seeking approval? … Is she doing this because she’s lonely?” Ms. Trach asked. “How can you tell with someone with dementia?”
She got few answers. Balancing her mother’s need for affection with her safety was “agonizing.” In the end, the family did not interfere with the relationship, although they asked that the pair be monitored as closely as possible by staff.
“If this is something that gives them joy and happiness,” Ms. Trach said, “maybe we have to put our own discomfort aside.”
Along with the other adult children of parents with dementia who spoke with The Globe and Mail, Ms. Trach decided to speak out on behalf of her mother, who is now largely non-verbal, to spread awareness about the sensitive issues of consent and connection in long-term care homes. Ms. Trach said she went public so that nursing homes “are awesome by the time we have to live in them.”
Today, in old-age institutions and outside of them, deeply ageist aversion persists toward elderly adults and sex – never mind those beset by Alzheimer’s.
“It can seem kind of, almost obscene, in some people’s minds, to be thinking about sex when you’re talking about someone who’s perhaps cognitively impaired, elderly or physically frail,” Ms Schulz said. “And it can seem somehow irrelevant: ‘How can you even be thinking about this when we’re dealing with massive issues of cognitive decline?’”
The Alzheimer Society of Canada is in the midst of overhauling its resources for families and other caregivers on the issue of sexuality and dementia. It’s enlisted the help of Lori Schindel Martin, an outspoken associate professor at Ryerson University’s Daphne Cockwell School of Nursing.
At Canada’s first sexual-consent conference, held in 2016 at Trent University in Peterborough, Ont., Prof. Schindel Martin asked the next generation of nurses to consider what human touch means for residents’ well-being.
“Research tells us,” Prof. Schindel Martin told the audience, “that older people will have an increased quality of life, enhanced self-esteem and will heal from their depression because they connected with someone on a level that involves their skin.”
Prof. Schindel Martin took the opportunity to call out what she views as pervasive censorship of elderly people’s sexuality.
She laced her keynote with eye-opening composite cases from two decades spent on the front lines as a gerontology nurse working with dementia patients. There was the man who adorned his walls with framed Playboy centrefolds; nurses protested and refused to go into his room. Another woman would lift her skirt over her shoulders and proposition male residents, or “sailors” as she called them. And there was the husband who visited his wife every day from lunch till 7 p.m.; the housekeeper was shocked to walk in on him one day with his head between his wife’s legs.
They were visceral vignettes meant to illustrate the very real sexuality of older adults, as well as our profound unease around it. Speaking from her small, turquoise-blue office at Ryerson last April, Prof. Schindel Martin argued that ageism permeates everything about this issue: we see elderly people as asexual beings taking afternoon tea together, not pinning nude centrefolds to their walls.
The academic says we need a rethink. Pointing to nursing homes’ risk assessments, cognitive questionnaires and panicked phone calls to family, Prof. Schindel Martin wondered if anyone would ever subject randy first-year college students to any of this heavy-handedness.
“One’s humanity and capacity for relationships become examined very deeply in ways that we don’t do with other people,” Prof. Schindel Martin said. “What we’re able to control are older people … to remove them from each other and create rules.” (At Trent, she likened it to “killing a mosquito with a hammer.”)
Prof. Schindel Martin insisted that most of what she’s witnessed in clinical practice involved people seeking each other out for company, belonging and warmth. She wants stronger training so caregivers can better discern harmless courtship from more problematic sexual behaviour.
“We need to step back and rethink what could happen in our worst imaginings,” Prof. Schindel Martin said. “We don’t even have good prevalence incidence data about how often these things happen.”
Canada does not collect comprehensive data on sexual abuse perpetrated by residents against other residents in long-term care. A cross-country scan revealed many provinces lump together reports of all kinds of abuses – physical, verbal, financial and sexual. Most provinces also fail to differentiate between different types of abusers, counting exploitative residents, visitors and staff members all together. Provinces that did break out these statistics reported “founded investigations” and not all reports, meaning tallies appeared conspicuously low. (For example, between 2012 and 2017, Nova Scotia reported just 18 proven investigations of non-consensual sexual activity between residents in 135 long-term-care homes.)
What we do know is that Canada’s dementia population is swelling. The number of Canadians over 65 with dementia increased 83 per cent between 2002 and 2013, according to the Public Health Agency of Canada, which found that some 76,000 new cases are diagnosed every year in this country. Today, more than half a million Canadians are living with dementia, according to the Alzheimer Society of Canada. By 2031, that number will nearly double.
As baby boomers become caregivers to aging parents and round the corner into old age themselves, they want long-term-care options that actually feel like home, not the cold, controlled institutions of generations past. They want their rights recognized, including the freedom to enjoy intimate relationships in some semblance of privacy, the way you would at home.
Experts believe the way forward lies within a broader push for “person-centred” health care that focuses on knowing patients individually: if you don’t bother trying to know them or their needs, how can you help them? Person-centred care doesn’t solve all the difficult, sometimes inscrutable questions facing nursing-home staff about consent, capacity and dementia. It’s by no means a magic bullet, but experts believe it is, at the very least, a more empathetic approach that doesn’t stigmatize ailing, elderly people looking for human connection.
At Sherbrooke Community Centre, a long-term-care facility that houses 263 people in Saskatoon, chief executive Suellen Beatty said caregivers need to be “really good detectives,” who decipher the unmet needs of their residents – not who admonish them. Married residents trying to take up with others in the nursing home are often seeking love and attention, Ms. Beatty said. For them, help can take on many different forms: extra hugs from staff, more visits from a spouse or something tactile, such as pet therapy.
Ms. Beatty argued that caregivers should prioritize residents’ happiness instead of only seeing them as fragile. “We want to make this a risk-free world for people, and then we wonder why they disengage,” Ms. Beatty said. “We can make this so safe that we take all the joy out of life.”
Set amid woodlands and farmers’ fields in Stouffville, Ont., Bloomington Cove Care Community is another nursing home that bills itself as person-centred. Here, all of the 112 residents have dementia. Most are women in their 80s; there are just 28 men here.
Residents are encouraged to keep their familiar routines, waking up, showering and eating on their own clock. Bedrooms are private and filled with things from home – a favourite arm chair, ornately framed oil paintings, school portraits of grandchildren. Outside each room hang memory boxes, wood and glass curio cabinets filled with war memorabilia, weathered wedding photos and other treasures. Meant to stir recollection, the boxes also remind residents which room is theirs.
Many here are in the advanced stages of the disease. Some tire themselves out pacing, others hoard, hallucinate or grow depressed.
“It’s very hard to grow old,” said executive director Janet Iwaszczenko, walking the teal and beige halls.
For those suffering from frontotemporal dementia, the disease often impairs judgment and the ability to read context and social cues. People can become disinhibited around sex. Residents will occasionally mix up staff members for their spouses and require “redirecting.” Sometimes, residents will court each other. “There’s no filter,” Ms. Iwaszczenko explained. “There’s no understanding of social appropriateness.”
Things get especially tricky when residents who are married pair off with their nursing-home neighbours. These extramarital relationships often catch families off guard. Nurses and social workers observe residents, talk to them and to their spouses and relatives, documenting everything on residents’ charts.
“[Families] have a lot of upsets going through this horrible disease with someone they love,” Ms. Iwaszczenko said. “We talk about it. That’s the most important thing.”
On a sunny morning in April, staff gathered for a “risk huddle” in a glassed-in office looking out into a communal dining room. Registered practical nurse Mun Lee went over the pressing issues of the day: patients adjusting to new medication, protocols for changing bed linens and good hygiene practice (“long toenails must be trimmed,” Ms. Lee instructed).
An elderly man sailed past the windows, blowing kisses to staff through the glass. It was Denis Underhill, a sociable, 94-year-old Second World War veteran. Talk at the meeting turned to Mr. Underhill and another resident, 80-year-old Harriette Stretton. Both widowed, the two had been inseparable for three years. “They’re very in tune with each other,” Ms. Iwaszczenko said.
They’d share meals, walk the halls and sing old songs such as Easter Parade to each other. He’d talk about wanting to marry her, often. There were frequent hugs, kisses and naps. Ms. Lee raised the pair’s nap time at the staff huddle. “Close the door,” she said. “Give them privacy.”
Ms. Stretton and Mr. Underhill’s relationship came as a relief to their families.
“There seems to be an underlying sense of comfort that he knows he is not alone,” Mr. Underhill’s daughter, Nancy Beard, said.
Staff would phone Ms. Beard and Ms. Stretton’s daughter, Theresa Elvins – who have power of attorney – to let them know what was going on between the pair.
“There were a couple of instances where I’d get a call: ‘We found your mom and Denis in bed together.’ And I’m like, ‘Oh my god,’” Ms. Elvins recalled (Ms. Beard refers to it as “canoodling”).
Mr. Underhill’s health declined in the winter and Ms. Stretton’s recognition has grown spottier. “You can tell there’s a glimmer,” Ms. Elvins said. “She knows she should know us and that we’re familiar, but she couldn’t tell you that I’m her daughter.”
Asked if her mother was aware in her romantic relationship, Ms. Elvins was certain. “I knew that she had feelings for him,” she said. “I knew she was communicating what she felt, and not what she thought someone told her to feel.”
Today, the two infatuated elders remain together, although it’s never been clear whether they know each other’s names: they call each other “sweetie,” Ms. Elvins said.
“Even though they might not remember who you are, they still have feelings and needs just like anyone else.”
Although everyone experiences anticipatory grief—a feeling of loss before a death or dreaded event occurs—some have never heard of the term. I didn’t understand the power of anticipatory grief until I became my mother’s family caregiver. My mother suffered a series of mini strokes and, according to her physician, they equaled Alzheimer’s disease. I cared for my mother for nine years and felt like she was dying right before my eyes.
To help myself, I began to study anticipatory grief. While I cared for my mother I wrote a book on the topic. Writing a book parallel to my mother’s life was an unusual experience. Later, Dr. Lois Krahn, a Mayo Clinic psychiatrist, helped me with the final version. Our book, Smiling Through Your Tears: Anticipating Grief, was published in 2005.
Writing the book made me aware of the power of anticipatory grief and I went on AG alert. I had severe anticipatory grief when my husband’s aorta dissected in 2013. My husband was literally bleeding to death. Surgeons operated on him three times in a desperate attempt to stop the bleeding. Every time he went to surgery I thought it would be the last time I would see him.
My grief was so intense I began to plan his memorial service.
Although you realize you’re experiencing anticipatory grief, you may not understand its power. Here are some of the sources of that power.
Your thoughts jump around. You think about the past, the present, and a future without your loved one. These conflicting thoughts can make you worry about yourself. Friends may notice your distraction and think you have some sort of psychological problem. You don’t have a problem; you are grieving.
Every day is a day of uncompleted loss. If you are a long-term caregiver as I was, you wonder if your grief will ever end. Worse, you may wonder if you will survive such intense feelings. You may start to feel like anticipatory grief is tearing you apart.
The time factor can grind you down. Since you don’t know when the end will come, you are on constant alert. Friends may not understand your feelings and wonder why you’re grieving if nobody has died. Explaining your feelings to others is hard because you can hardly track them yourself.
Suspense and fear are part of your life. Because you fear others won’t understand, you keep your feelings to yourself. Grief experts call this “stuffing feelings” and you may feel stuffed with worry, insecurity, and sadness. Uncertainty seems to rule your life.
Anticipatory grief can become complex. Grief expert Therese A. Rando, PhD, author of the article, “Anticipatory Grief: The Term is a Misnomer but the Phenomenon Exists,” says anticipatory grief imposes limits on your life. That’s bad enough, but as time passes, your anticipatory grief keeps expanding. “I’m tired of waiting for my mother to die,” a friend of mine admitted. I understood her feelings.
There is a shock factor. Edward Myers, in his book When Parents Die: A Guide for Adults, says anticipatory grief doesn’t have the shock of sudden death, yet it exacts a terrible toll. As he writes, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”
Lack of an endpoint. Although you may think you know when your loved one’s life will come to a close, you aren’t really sure. Waiting for the end can put your life on hold, sap your strength, and prolong anticipatory grief.
You feel sorrow and hope at the same time. Hope may be the most unique aspect of anticipatory grief. While you’re grieving you hope a new drug will be invented, new surgery will be developed, or your loved one will experience a miraculous turn-around. Hope can keep you going.
Understanding anticipatory grief can keep you going too. Joining The Caregiver Space Facebook groups can be a source of support and hope. Remember, you are not alone. You are in the company of thousands of other caregivers, and we can help each other.
If you are a terminally ill cancer patient, where you live can determine how much it will cost for you to die.
The last month of life for a Medicare patient diagnosed with advanced-stage lung or colorectal cancer cost an average of $13,663, according to a study published today in the journal Health Affairs. But that cost can also vary widely, the study suggested, from $10,131 per patient in the lowest 20 percent of hospital referral regions included in this study to $19,318 in the highest 20 percent.
What drives those price differences? A physician’s medical philosophy and practice styles propelled higher medical bills, and patients in geographic areas with fewer primary doctors and hospices per capita also tended to have higher end-of-life costs, the study said.
Researchers reached this conclusion after surveying physicians on what they believed, how those beliefs played out in practice and how skilled they were in delivering end-of-life care, along with patient and claims data.
These findings underscored how important end-of-life decisions are, even when a patient may be days away from death,said Nancy Keating, a health care policy professor at Harvard Medical School and physician who led a team of researchers for this study. For instance: Does it make sense to give a stage-IV lung cancer patient with virtually no prospects of recovery a fourth round of chemotherapy? Or would it be better to talk about entering hospice care?
“We need to do a better job of helping train physicians to feel more comfortable and be more comfortable talking about end-of-life care with patients,” Keating said.
Nearly 40 percent of the 3,139 doctors in the study said they strongly agreed that they were “well prepared” to offer end-of-life care. Roughly as many — 43 percent — said they would recommend chemotherapy to a patient with late-stage lung cancer, despite concerns about that patient’s ability to recover or the pain they might endure. Yet two-thirds of physicians said they would prefer hospice if they were terminally ill.
For patients, 12 percent of those surveyed said they believed “cancer can be cured” and as many patients said cancer treatment can result in “serious side effects,” according to Keating’s data analysis. More than a third of patients said they wanted treatment that could help them live longer “even if it causes more pain” and 43 percent of patients said they preferred such treatment even if it drained their finances.
This study joins a growing body of research on lowering health spending and the role of palliative and end-of-life care in improving the final days of a patient’s life, said Otis Brawley, who serves as chief medical officer for the American Cancer Society and did not contribute to this study.
“The growth of palliative and hospice care in the U.S. is really important for improving quality of care,” Brawley said.
For years, Keating has pored through Medicare and Medicaid oncology data to figure out how to better spend money. In this latest effort, she analyzed claims data for 1,132 Medicare patients age 65 or older who had been diagnosed with late-stage lung or colorectal cancer between 2003 and 2005. Her team then tracked those patients until 2012 using the Cancer Care Outcomes Research and Surveillance Consortium study that draws on registries of cancer patients.
She linked patient information from these two datasets to overcome what she sees as a weakness in many studies about health care costs — researchers often only see a snapshot of a living patient. This study tracked them throughout multiple points in time. That said, Keating concedes that a limitation of this study is that many patients died by the late 2000s , narrowing the pool of people who could be studied beyond that point. Most patients — 65 percent — died by 2005, within the first three years of the study period.
In this study, researchers scanned 26 hospital referral regions — from McAllen, Texas, to Manhattan, New York — of the 306 regions nationwide. Patients were assigned to these regions based on the ZIP code where they lived at the time they were diagnosed with cancer.
“In a perfect world, we would have gotten national data,” Keating said, but capturing responses from newly diagnosed cancer patients about their care preferences “would have been impossible.”
There are some “very human reasons” that may account for disparities in price and treatment preferences, Brawley said in an email to the PBS NewsHour. Sometimes, primary care physicians develop long-standing relationships with the families they serve, he said, and specialty physicians also forge bonds with families when a patient endures the trauma of receiving treatment for a life-threatening illness. This might make a physician more apt to suggestion additional interventions, despite negative side effects.
“Some would criticize them for believing too much in the medicine they practice,” Brawley said, “but my experience is it’s more complicated than that.”
The calculus of treating patients with advanced-stage cancer is difficult, said Laurence Heifetz, medical director at Gene Upshaw Memorial Tahoe Forest Cancer Center in Truckee, California, a rural cancer care practice he has built north of Lake Tahoe over the last 12 years.
A patient’s expectations don’t always align with what the best treatment might be or with what resources are currently available, said Heifetz, who also spent two decades treating cancer patients at 1,000-bed Cedars-Sinai Medical Center in Los Angeles.
When considering palliative care, it’s hard for doctors to know who has six months left to live — the threshold for offering end-of-life services, Heifetz said. And a treatment that works for one patient may not for the next, even if they have the same type of cancer, he said: “We don’t know who will respond, and then we’re blamed after the fact for giving an unnecessary drug to someone who dies.”
But Heifetz thinks he knows one way to bring down cost while delivering high-quality care: “An earlier, more honest conversation with patients will allow for more realistic acceptance of the sentence, ‘I guess it’s time to quit.’”
In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.
These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.
She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.
A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”
You see, that’s how she used to die. We saw our elderly different then.
Still the Same Person
We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.
We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.
‘Enriched and Happy’
We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.
We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.
We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says: “It’s time to come home.”
Adding Time but Not Life
This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.
You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to “keep her safe.”
She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.
She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.
‘We Stopped Seeing Her’
We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.
We stopped seeing her, not intentionally perhaps, but we stopped.
This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.
A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”
I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.
A Slow, But Enormous Change
This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine.
Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.
Nearly 50 percent of the elderly U.S. population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways.
‘What in the Hell Were You Thinking?’
We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”
When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.
Death is no stranger to two Okanagan women, who have guided their loved ones through the unique journey.
What’s new, however, is their growing role in helping the wider community embrace a different kind of death experience.
“There’s a lot of paradigm shift(ing) happening right now, people want to talk about it,” said Sue Berlie, shamanic coach, death walker and psychopomp.
Berlie, alongside Alison Moore, a life-cycle celebrant and sacred passages doula are also both trained as home funeral guides through the Canadian Integrative Network for Death Education and Alternation (CINDEA). They are also facilitators of the Okanagan Death Cafe.
Death Cafes were created in 2004 and has spread around the world. The events offer unique opportunities for conversations about death, the dying process and preparation to be had. Through guided in-depth conversations with each other, participants find solace and a new understanding of a usually taboo subject. Currently, 6,588 Death Cafes have been hosted in 56 countries.
Berlie and Moore were drawn the worldwide Death Cafes because of their grassroots nature, and the high demand for people wanting to get more involved with the death and caring of their friends and family. They were also getting sick of the current “business” of dying.
“A lot of people want to die at home and aren’t given that opportunity, and when they do (die at home) we don’t let them lie there and have their friends and family come in where we can hold services … rather, the person dies and has been whisked off to a funeral home and everyone has been left there with a void,” Moore said.
Funerals cost somewhere between $1,000 to $12,000 according to Canadian Death Services Online , and B.C. currently has the highest rates for cremation in Canada.
Seventy per cent of North Americans prefer to die at home, and only seven per cent said they wanted to die in a hospice or palliative care home, in a survey conducted by Donna Wilson, at the University of Alberta. Wilson also teaches nursing and researches dying in Canada and the survey also found that 60 per cent of Canadians actually die in hospital and 10 per cent die in nursing homes.
Outside of religion, rituals to be held after death are lacking and that’s become a problem.
“People are having a deeper experience when helping and preparing for death, part of what we are excited about is helping people grieve well. You should die well and grieve well,” Moore said.
Moore’s education in the world of death and dying began when she found out she was expecting her first child and her best friend was diagnosed with stage four breast cancer.
“Here I was gestating life and my best friend was given three to six months to live. She ended up living on Elisabeth Kübler-Ross’ farm (a pioneer in near-death studies and author of On Death and Dying) and becoming one of the subjects in her book. She brought us on this journey of spiritual exploration with her,” Moore said.
Talking about death and dying hasn’t been difficult since that perspective-shifting experience. Now as a celebrant, Moore “marries and buries” people, guiding them through different life-changing experiences; the birth of a child, officiating marriages and officiating funerals.
Moore is now a certified death doula whose first guided her father through death.
“It was very interesting being on the inside, as a daughter, and being the person that was trying to hold space for the person I was caring for — it was an extraordinary experience. We are trained to focus on the person we are caring for, providing them with a beautiful quality of life and death. We are of service to the path that the person is taking, and it is a sacred one.”
Berlie, a psychopomp (a guide of souls to the place of the dead) takes a different spiritual journey in her work. There is no general scenario, as she works on a case by case basis. She can be there during a death, after, or if asked by a family member or the person who is dead to ensure their spirit is not trapped. Berlie also facilitates conversations, ceremonies and rituals. Berlie calls it dreaming themselves into their next life.
“It will always depend on what people believe, you have to stay within their beliefs, you cannot introduce anything. It is about them and what they want,” Berlie said. “Dreaming into what is next, is more of a conversation and I see that with the more Death Cafe’s we hold, the more people become open to other things and they start to explore within themselves wondering “well maybe my body doesn’t just shut down and that’s it for my spirit.””
Berlie works alongside spirit guides, spirit animals and the realms to help spirits continue onto the journey of what is next.
Her work began when she was 18 years-old and her best friend died suddenly in a car accident.
“He stood there clear as day and talked to me the night he died— I later went to a psychic 30 years later and she said “Oh who is that over your left shoulder? You have a bright gold orb hovering there, he hasn’t left your side.” It was my friend and he didn’t realize he was dead. He is my spirit guide and I believe he helps me in my work.”
Berlie later volunteered at a hospice and found she was not able to help people in their last stage of life in the way she felt compelled to. She changed her career in order to strengthen her ability as a psychopomp by becoming a shamanic practitioner, and certified death walker. Shamanic practitioners are healers who move into an altered state of consciousness to access a hidden reality in the spirit realms with the purpose of bringing back healing, power and information.
As a death walker Berlie accompanies people as the go onto their journey towards death, nurturing, enhancing and strengthening the capacity of the person about to die. While providing legal and practical knowledge to them and the family.
The next Okanagan Death Cafe series has yet to be scheduled but the women have decided to host them bi-monthly instead of annually to accommodate and continue the conversations around death and dying.
“What I would like to see and what is beginning in these dialogues on death and dying is, that people are opening up to the fact that the one thing we know when we are born is that we are going to die. We need to start embracing in our daily lives, because each day is a gift,” Alison Moore said.
For more information, or to find a Death Cafe near you please visit www.deathcafe.com
The American way of dying seems to have become less frantic, desperate and expensive.
That’s the upshot of a new study that finds that seniors insured by Medicare who died in 2015 were less likely to do so in a hospital and more likely to pass away in a home or other community setting than those who died in 2000.
The new research also showed that the proportion of American seniors who were admitted to the intensive care unit during their final month of life has stabilized after rising between 2000 and 2009. By 2015, 29% of dying patients insured by Medicare spent part of their final month of life in the ICU.
The study also chronicled a slight decline in the proportion of Medicare patients who spent time on a ventilator during their final days and whose last three days of life were affected by a transfer from one institution to another — say, from a nursing home to the hospital.
The findings were published this week in the Journal of the American Medical Assn. They were based on an analysis of records from 1,361,870 Medicare fee-for-service enrollees and 871,845 Medicare Advantage enrollees who died between 2000 and 2015. Their average age at their time of death was 82.
In all, just short of 20% of Medicare-insured patients who died in 2015 did so in an acute-care hospital, down from 32.6% who did so in 2000. Some 40% of these patients died in a home, hospice, assisted living facility or other community setting in 2015 — up from about 31% in 2000.
Those shifts took place during a period of sweeping changes in U.S. medical care.
As the 21st century got underway, palliative care gained a foothold in U.S. hospitals. This new medical specialty focused on improving the quality of life for very ill patients.
Then, with the adoption of the Affordable Care Act in 2010, hospitals adjusted to new rules aimed at improving the quality of care and reducing expensive patient readmissions.
Meanwhile, doctors and hospitals began a vigorous reassessment of the way they cared for patients who were approaching the end of their lives. Studies chronicled many terminal patients’ tumultuous final days of treatments that were invasive, painful and futile. Other research toted up the traumatic stress experienced by surviving family members.
Physicians began to ask themselves and their patients whether their profession’s dedication to such “heroic measures” were saving patients’ lives — or poisoning their deaths.
In 2014, that debate culminated in a report by the National Institute of Medicine that defined a “good death” as one that is “free from avoidable distress and suffering for patients, families and caregivers” and “in general accordance with patients’ and families’ wishes.”
A patient’s death in the intensive care unit “is seldom viewed as a good death,” concluded the report, issued by the National Academies of Sciences, Engineering, and Medicine.
“There was a greater collective awareness that not all medical interventions are equally beneficial, and that the potential harms of some needed to be weighed,” said Dr. Diane E. Meier, a geriatrician and palliative care specialist who directs the Center to Advance Palliative Care and was not involved in the new research.
A greater focus on the comfort and values of seriously ill patients went hand in hand with the widespread adoption of palliative care teams in hospitals across the United States. These teams included specialists in pain management, mental health, legal and social work, and pastoral care, and they’ve been key in helping clarify what kind of lives — and deaths — patients with serious illnesses want. Then they help those patients and their families plan accordingly.
In 2000, fewer than 20% of hospitals with more than 50 beds had a palliative care team in place. By 2015, close to 70% of such hospitals did, according to a registry maintained by the Center to Advance Palliative Care.
“It’s impossible to say what’s at work here,” said Meier, who underscored that the new study shows a broad trend but does not delineate contributing factors. The changes came against the backdrop of significant shifts in insurance, institutions and professional practices, she said.
The analysis also yielded a wealth of small details about changing practices in end-of-life care.
For example, the study found that the use of hospice services by dying patients increased from 21.6% in 2000 to over 50% in 2015. And the proportion of patients in the study who died after getting only brief hospice services — for three days or fewer — dropped slightly, from 9.8% in 2009 to 7.7% in 2015.
The share of patients who had three or more hospitalizations in their last 90 days of life declined from 11.4% in 2009 to 7.1% in 2015. And the share of patients who spent part of their final four days on a ventilator fell from 3.1% in 2000 to between 2.5% and 2.7% by 2015.