My 92-Year-Old Father Didn’t Need More Medical Care

Ordering up more tests and surgeries for dying patients is easy. Getting patients the end-of-life care they deserve takes much more effort.

By

My 92-year-old father fell one Saturday night a few months ago. My mother could not pick him up. Her brother was not answering his cellphone, so she called 911. An ambulance crew brought him to the hospital.

The emergency-room physician ordered a CT scan. A spot on the scan worried him, so he ordered an MRI, which confirmed that a tumor the size and shape of a pear was occupying the frontal lobes of his brain. Meanwhile, a chest X-ray gave the physician some reason to suspect pneumonia—the image of the lungs looked cloudy, though it lacked the focal infiltrates that usually signify that condition—so he admitted my father to the hospital.

I took the first flight from Washington, D.C., and arrived in his room at a suburban-Chicago hospital at about 9 a.m. He was sitting in a chair, and all sorts of white wires were emerging from under his flimsy hospital gown. His index finger, because of the oxygen monitor attached to it, glowed like E.T.’s. Still, my father was acting like himself. When I entered the room, he mischievously needled me: “How are you doing, schmucko?”

The monitor above his bed showed a regular heart rate and oxygen saturation of 100 percent. The IV pole towering over him showed two empty bags of antibiotics.

I squeezed my dad’s hand, and we talked for about 20 minutes. Then I stepped out of the room to find the doctor to ask some questions. Standing at the nurses’ station, I was introduced to a neurosurgeon and a neuro-oncologist, who were ready to talk to me about my father’s condition and treatment options.

My father had a large brain tumor that could not be cured and would end his life. No neurosurgeon or oncologist could change the inevitable. Especially in light of his age, any intervention that involved drilling into his skull and biopsying or removing part of such a big tumor would only worsen his quality of life. We didn’t want to interfere with him talking with his children and grandchildren and playing with his great-grandchildren during the time he had left.

But no one had taken the time to ask him about his wishes regarding medical treatment, even though he was competent to make decisions and was himself a physician. No one asked my mother and brother, who were with him in the emergency room and at the hospital, if he had an advance-care directive or wanted to have a do-not-resuscitate order. My father, a pediatrician, was one of those doctors who hated getting any medical care. Fifteen years before, he had walked around for three weeks insisting that the pain at the bottom of his rib cage was just acid indigestion. Eventually, he consented to go to his internist and was diagnosed with a heart attack, which required a bypass operation. Everything about the way he’d lived meant he certainly did not want any brain surgery with no chance of a cure. He wanted to die at home having shared his final days with his family.

Since the mid-1980s, I have worked to make this type of end-of-life care possible. I am a physician too. Once my father was admitted to a hospital, it took all my expertise and experience to arrange the kind of care he needed—and prevent the medical system from taking over and prescribing unnecessary interventions.

It was easy for the hospital physician to call a neurosurgeon and neuro-oncologist and for them to assess my father early on a Sunday morning before I arrived. But when I asked if we could get my father a palliative-care consult on Sunday, the answer was a definitive no. All we got was the number of the hospital’s palliative-care service; we had to call the next day, during normal business hours, to arrange a future consultation.

It was easy for the physician to prescribe my father two antibiotics for his supposed pneumonia even though he had none of the symptoms—a fever, ugly-looking phlegm, shortness of breath. Indeed, he was comfortably breathing room air with 100 percent oxygen saturation, which people with pneumonia typically can’t do. But it was impossible for the physician to order an in-home aide to help my father shower, get to and from the bathroom, and navigate the stairs to the living room and kitchen.

It was easy for my mother to call 911 and have him transported to the hospital. But if he fell again, there would be no 911-like number for my mother to call for urgent assistance short of EMTs and ambulances.

It would be easy for the emergency-room physician to admit my father again, and even put him in the intensive-care unit. But no one suggested that he and my mother get mental health care or see a grief counselor to cope with his new terminal diagnosis.

The hospital was no place for my father to spend his last days. To thwart the medical system’s momentum to lard on ever more costly, unnecessary, and unwanted interventions—and to convince the medical staff we were serious about no—I took my father’s oxygen monitor off his finger, disconnected his cardiac monitor, insisted that the nurse remove his IV, and asked the physician to discharge him as soon as possible.

Beyond a suggestion that we find a home-care agency to call, the hospital offered no assistance in getting him help at home. Ironically, the aide transporting him out of the hospital volunteered that she knew someone who was available to provide home care. Through my father’s former nurse and someone she knew, we ended up getting a talented and kind set of cousins—immigrants from the Philippines—who were able to provide care.

Despite the medical system, my father did avoid further trips to the hospital, an ICU admission, and more antibiotics and machines. He spent the rest of his time at home and was able to say goodbye to everyone. And being at home was cheaper. We still don’t have all the bills, but the tab just for about 12 hours in the hospital came to $19,276.83. In contrast, the more than 200 hours of home care he got over the next 10 days cost only $6,093.

Many Americans are puzzled about why end-of-life care costs are so high, and why physicians cannot seem to reduce them. My father’s story is the answer.

It has less to do with physicians’ and hospitals’ financial incentives to admit more patients and perform more medical interventions, and more to do with the effort required to order and provide human care. For providers, ordering tests and consultations and prescribing antibiotics is easier than listening to and diagnosing the particular needs of the person in front of them. It is easier for the medical system to marshal all sorts of costly interventions—MRI scans, hospital admissions, neurosurgeons, cancer chemotherapy, and the rest—but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling, and home care to patients and their family. Until the system takes account of the whole patient and provides the whole package of humane care as the default—so that it’s routine and made available 24/7 with one physician’s order, just as chemotherapy or an MRI would be—Americans will not be able to finally change end-of-life care and reduce those costs.

A terminal diagnosis is inherently traumatic for patients and their families. My father’s experience at home before his death needs to become the standard of care. And not just for patients with pushy sons who have medical training and know how to speak with physicians, disconnect cardiac monitors, and firmly refuse the interventions that our health-care system is so predisposed to offer.

Complete Article HERE!

Dying in the Neurosurgical I.C.U.

In cases of brain death or neurologically devastating injury, poor communication can make painful situations even harder.

By Joseph Stern, M.D.

The bullet hole in the teenager’s forehead was so small, it belied the damage already done to his brain. The injury was fatal. We knew this the moment he arrived in the emergency room. Days later, his body was being kept alive in the intensive care unit despite an exam showing that he was brain-dead and no blood was flowing to his brain. Eventually, all his organs failed and his heart stopped beating.

But the nurses continued to care for the boy and his family, knowing he was already dead but trying to help the family members with the agonizing process of accepting his death.

This scenario occurs all too frequently in the neurosurgical I.C.U. Doctors often delay the withdrawal of life-sustaining supports such as ventilators and IV drips, and nurses continue these treatments — adhering to protocols, yet feeling internal conflict. A lack of consensus or communication among doctors, nurses and families often makes these situations more difficult for all involved.

Brain death is stark and final. When the patient’s brain function has ceased, bodily death inevitably follows, no matter what we do. Continued interventions, painful as they may be, are necessarily of limited duration. We can keep a brain-dead patient’s body alive for a few days at the most before his heart stops for good.

Trickier and much more common is the middle ground of a neurologically devastating injury without brain death. Here, decisions can be more difficult, and electing to continue or to withdraw treatment much more problematic. Inconsistent communication and support between medical staff members and families plays a role. A new field, neuropalliative care, seeks to focus “on outcomes important to patients and families” and “to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.”

Not long ago, my surgical partner performed late-night emergency surgery on a young woman who had also been shot in the head. This time, the bullet’s violent impact exploded her skull. It traversed both hemispheres of her brain, including her basal ganglia and thalamus (deep brain regions affecting consciousness). Injury to these areas has a dismal prognosis, as do penetrating injuries to both sides of the brain. But, unlike the first patient with a single bullet hole and no exit wound, the initial explosion decompressed her brain, accommodating swelling rather than producing dangerously high pressures as occurred in the first patient, which led to brain herniation and his death.

This young woman lay in her I.C.U. bed, breathing with the aid of a mechanical ventilator, turned by nurses every two hours, fed through a thin tube passed through her nose into her stomach: never conscious, never moving spontaneously, seemingly unaware of her surroundings. She was likely to remain this way for the rest of her life.

The treating physicians and nurses agreed on the patient’s prognosis, and on a consistent message everyone could support. We met with the family at the young woman’s bedside and later telephoned out-of-state family members. The I.C.U. director and I spoke about difficult medical decisions we’d had to make regarding our own family members, and we asked them what she might want, since they were representing her interests and acting on her behalf. I explained her injury and the likelihood that she would never recover: Together, family members and neuro-I.C.U. caregivers agreed to transition the woman to comfort care and let her die.

Two years ago, I too was on the family side of this situation after my brother-in-law Pat collapsed with a brain hemorrhage from a ruptured cerebral aneurysm. As the only physician in the family and Pat’s legally designated health care power of attorney, I made his medical decisions and communicated with the rest of his family, including his two sons, who were then 16 and 18 years old. This was all the more difficult because a year previously, his wife, my sister Victoria, had died of leukemia, leaving Pat as their children’s sole caregiver.

Pat was taken by ambulance to U.C.L.A. Medical Center in Westwood. Before flying to Los Angeles, I agreed to surgical clipping of his ruptured aneurysm. Technically, surgery went well, but Pat never regained consciousness. While never brain-dead, he remained deeply comatose. His neurosurgeon, Gregory Lekovic, was supportive: he and I discussed a timeline at our first meeting. He recommended giving Pat at least a week to improve. If he did not, Dr. Lekovic counseled us not to allow a tracheostomy and G-tube placement (permanent surgical routes for breathing and nutrition), and opt instead to withdraw treatment. This would be the clear stopping point. Dr. Lekovic and I worried it would be difficult to back off after those procedures had occurred.

Throughout the following week, Pat did not improve at all neurologically. Everyone hoped he was rallying. I felt like a wet blanket, continually challenging the other doctors’ enthusiasm. Understanding his condition and having legal authority to make decisions allowed me to keep a clear view of care objectives, but it didn’t make the situation easier on a personal level. Pat’s children had only begun coming to terms with losing their mother and were now confronting the possible loss of their father. But delaying this loss wouldn’t justify his continued existence without quality of life. He would have hated being comatose or severely impaired in a nursing home, unable to relate to his family or to care for his own basic needs such as eating or toileting, and had feared burdening his family.

The likelihood was that Pat would never regain consciousness. Yet on the morning we had planned to withdraw treatment, one of the neuro-I.C.U. specialists presented a scenario in which Pat might wake up, become able to walk with assistance and participate with his family. When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome.

Then Dr. Lekovic, speaking plainly, told us that for himself or his family member, he would make the decision to end treatment. He seemed genuinely sad. Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty. In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.

My nephews appreciated the truth when I explained their father’s prognosis. While they were devastated at the prospect of losing him, honesty and inclusion in decision-making were important in helping them move forward with their lives.

Even with my training, I wondered if I was making the right decisions. Each affected family faces similar burdens. We all need better help wrestling with decisions in neurologically devastated patients, both through improved communication and the development of neuropalliative services.

Those of us in the medical profession cannot allow ourselves to focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life. We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.

Complete Article HERE!

Dying young:

‘It’s not what you think’

Joe is 34 and is facing his own death. He was given a terminal cancer diagnosis and has already lived longer than doctors predicted. He tells Leah how dying was nothing like he had anticipated, and he and his friends discuss the impact this unexpected turn has had on how they view life

Challenging Cultural Norms About Death to Reframe My Grief

By Hannah Velten

I denied my grief for 15 years. My brother, Christian, had disappeared in Africa while traveling alone in 2003. But he wasn’t dead. He was still alive, just having problems that meant he couldn’t or didn’t want to return home. That’s what I told myself.

Part of me knew, though, that he was dead. But those hulking great feelings of panic, terror and abandonment would only surface on anniversaries and birthdays. Then I’d bury them and concentrate on life again. I didn’t know what to do with these feelings. I couldn’t label them as “grief,” because we had no news to say he was dead. But now I can see I was grieving. Of course I was. I’d been abandoned by my soulmate, whether he was dead or not.

The label for this type of grief would be “anticipatory grief,” but when you’re in the throes of searching for a missing person it feels disloyal to accept grief. I had also invested too much of myself and my time in trying to find him, via social media and media exposure, to stop and admit it was a wild goose chase. I was determined to find him. I had not been abandoned by him, and I certainly wasn’t going to abandon him.

But that’s what I was feeling. Abandoned. Left behind. Lost without direction. Yet years later, in 2018, when I did finally accept that Christian was dead, I had no feelings of abandonment. Why? Well, he’d been drugged and drowned all those years ago — he’d never meant to abandon me, or anyone — and, although he is no longer in the physical world (and his body has never been retrieved), he and I have a closer relationship now than ever before.

It’s a leap for most people because of the cultural norms we hold about death being the end of life. The end of the relationship. Grief, I believe, has its roots in abandonment. If you think you’ve been abandoned, you feel lonely, angry, distrustful and fearful. Depending on how your loved one died, and the relationship you had with them, you might also feel anger, guilt, shame or any number of other emotions towards yourself, them or others.

Abandonment is something no one wants to deal with, so when death affects us (and no one is immune), we label it “grief.” Grief is commonly understood — it’s expected when someone dies. There are stages of grief; there are books written about it. But what if grief is actually one thought: “I’ve been abandoned”?

We’ve all been abandoned at some point in our lives, and it’s painful. The first time I lost Christian was when he left for boarding school; my trust in him, and everything, shattered. Loss affects us emotionally, socially, financially and mentally — the death of a loved one is no different.

“Why have you left me behind?”

“What am I supposed to do without you?”

Common thoughts; well, they were my thoughts anyway. But the reality of death, in our experience, is that Christian didn’t, and hasn’t, abandoned me at all. He’s still perfectly alive, just in another room.

To get a full connection, like Christian and I have, I realized we needed to clear the “gunk” between us, which means releasing the fearful feelings between us — the anger, the mistrust, the shame, the hurt. Death brings these unhealed wounds to the surface, even in the best of relationships.

Through mediumship sessions, we’ve been working through our sibling relationship for almost a year — understanding and forgiving each other — when he was still physically missing in Africa. He’d repeatedly told me he was so changed, after being in Africa for 15 years, and that it would be a shock for us all on his return. He wanted to know that he could trust me, that I would protect him and look after him. That I would still love him whatever had happened. As I told him I loved him whatever he’d done and whatever he was now, I felt the unconditional love passed between us.

With clarity gained, Christian’s been free to move into the Light. This might have felt like another layer of abandonment, but because there was/is unconditional love between us, Christian went from being my brother to being my soul-brother — a wiser, all-knowing, ageless and eternal presence in my heart. He’s still my brother in the way we speak with each other, in the way he’s with me and the way he interacts with others.

At this point, if you are grieving and can’t seem to move on, ask yourself, “Do I feel abandoned?” If the answer’s ‘Yes’, you may just have your key to healing…

Complete Article HERE!

The Rising Cost of Not Living

by Mona Chalabi

Jerry Burton was a frugal man. So frugal, in fact, that his possession of an organ donor card was motivated by his disdain for waste. While he was still in hospice care, Jerry made it clear to his son and daughter-in-law that they should shop around to get a good deal on his funeral. They did. In total, the transportation of Jerry’s body, the cremation, and the pickleball tournament that he wanted to be held before his service cost $695. Such bargains are a rarity in America’s modern funeral industry.

The median pricetag of a funeral in 2017 was $7,360—a cost that would take the typical US worker five months of labor to cover. Because of these high prices, many families are panicking at the same time that they are grieving. 

The death of Kara Killeen’s father was followed by calculations that provide a depressing tally of the average American’s struggles. Student debt bills meant that Kara and her sister had less money in the bank (and much of her dad’s retirement money had gone toward helping them cover those repayments, as well as the family’s mortgage). Limited care provision under Medicare meant that Kara’s mother had lost her job to look after her sick husband (and since her job had been writing for the local newspaper, there wasn’t exactly an abundance of new vacancies for her to apply for later). And, like many American families today, the Killeens don’t all live in the same city, so there were flights to think about, in addition to the funeral costs.

Fortunately, an aunt was able to cover Kara’s flight back from Scotland to Ohio. Unfortunately, the fact that Kara needed an intermediary in another time zone to book her travel meant that she made it back two days after her father’s death. Once reunited, the family looked at their funeral options; they were shocked at the prices they were hearing. A reception in a local bar where her dad had been a regular customer would cost $3,000, including catering. They could have held it at their family home for free, instead, but that wasn’t really viable: Kara had come back to discover the house where her mother had cared for her dying husband was a messy cross between a hospital and a home. An urn would have cost $275, programs $160, and an obituary $200, according to the latest averages from the National Funeral Directors Association.   

In the end, with her aunt’s financial support, Kara’s family was able to pay for the cheapest option available: Kara’s father was cremated and his remains were returned to the family in a plastic bag, and there was no funeral. The family still faced a bill for $2,000. “His final mark on the world was just to not have enough money,” Kara told me, bitterly. Funerals are supposed to be a chance to grieve, mourn, and begin the process of emotional recovery after a death; but when money is tight, they can feel like a second trauma. 

In the movies at least, funerals are a chance to meet old friends that you didn’t even know that your dearly departed had. To hear stories that you had never heard before. “You expect everyone to be there,” Kara said. We infer much about a life from a funeral. For no service to be held might imply some secret shame. A small gathering might indicate a lack of popularity. Cheap flowers suggest, well, cheapness. Each of these sentences could just as easily apply to another of life’s landmark social gatherings—weddings—except that marriage customs have changed faster than our death customs. 

It is a matter of personal prerogative whether a couple spends their life-savings on a Star Trek-themed extravaganza or just heads to city hall with two strangers pulled off the street to act as witnesses. That choice is more likely to be seen as a question of taste rather than of moral character. But when the social occasion requires people to be present to honor someone who is absent, then the rules change.  

The desire not to skimp (or at least, to be seen not skimping) leads us to make bad decisions according to Joshua Slocum, the executive director of the Funeral Consumers Alliance, a nonprofit watchdog. “It’s a distressed purchase,” he explained. “No one wants to buy a funeral.” Our decisions are clouded, not just by grief but by the fact that there is no requirement for funeral homes to email you a pricelist or post one on their website. “I can’t think of any other business sector that doesn’t allow you to shop around,” Slocum added. So families will simply choose whichever funeral home they used the last time they had to hold a service. 

What those families rarely realize is that their local funeral home, once run as a “mom-and-pop” family business, is now probably owned by a Wall Street firm. Service Corporation International, or SCI, for example, operates 1,477 funeral service locations and 483 cemeteries across the country, and is worth $13.3 billion (for comparison, the countrywide clothing chain Gap Inc. is worth $8 billion). Shareholders expect dividends and they have to come from somewhere: according to Slocum, SCI charges between 40 percent and 75 percent more for its services than independent funeral homes do. 

The price of dying is also high because there are simply too many funeral homes. Slocum gives me the example of Montpelier in Vermont, the smallest state capital (by population) in the country. The city has two fully serviced funeral homes that, between them, handle an average of seventy-six deaths a year. These businesses have to keep prices high if they want to cover their mortgages and pay their staff. 

I asked Slocum why he became involved in funeral consumers’ rights. He replied simply, “I love Mitford.” It was after reading Jessica Mitford’s classic muckraking polemic on the American funeral industry, The American Way of Death (originally published in 1963), that he became fascinated by the industry and wanted to know more. Little of substance has really changed in the business since Mitford’s book was published except for the escalating prices. Back in 1960, the cost of a funeral was around $700—still a considerable amount of money in real terms, amounting to about seven weeks of a typical worker’s wages at that time (as noted above, by the same measure, today’s figure is at least twenty weeks).

Funeral charges have risen for the same reason that prices have always risen: a disconnect between demand and supply. For a combination of reasons—cost, changing mores, and environmental concerns—more consumers now want their remains and those of their relatives to be burned rather than buried, but the US funeral industry is largely stuck in the past. In fairness, this cultural change has come relatively quickly: in 1960, when Mitford was researching her study, just one in twenty-eight people who died in the US were cremated; today, it’s one in two—half of all funerals. Yet mortician schools still place a heavy emphasis on embalming skills, and more than two thirds of states (thirty-six out of fifty) require funeral establishments to maintain an embalming room (or access to an embalming preparation room); and nearly half of states require a funeral director to be a certified embalmer. Those laws directly contribute to higher prices. In a study published last year, two economists at Kenyon College in Ohio, David E. Harrington and Jaret Treber, calculated that embalming regulations in New York State cost consumers an additional $25.8 million each year.

Although American business traditionally hates regulations, regulating how companies handle and dispose of cadavers makes sense—there are too many public health and public safety considerations involved, let alone consumer rights, for this to be otherwise. “Now, death is seen as an emergency: a dead body has this association of being a biohazard,” explained Caitlin Doughty, who started working in deathcare in 2008 and today owns and runs Undertaking LA. This contrasts sharply with the way a decease was handled 150 years ago, in a pre-industrial era. “Death was a domestic task,” she said. “The women would prepare the body, the men would prepare the casket.”

States began to legislate to control funeral directors around the same time they set professional standards to govern doctors and lawyers, in the mid-nineteenth century. The main aim was to protect the vulnerable—in this case, the bereaved—from charlatans. But many state laws about deathcare now appear outdated or nonsensical. Four states prohibit funeral homes from serving food and beverages entirely, and in New Jersey until very recently, homes could only serve water and peppermints (it is unclear whether such rules arose for reasons of decorum or public hygiene). In five states, funeral directors have exclusive rights to sell caskets, in effect a protectionist measure that blocks cheaper competition—such as Amazon’s “Premium Cardboard Coffin for Adult Funeral,” for just $235.

The outlook seems bleak for customers with few choices and facing high costs. But after sixteen years working in funeral consumer rights advocacy, Slocum doesn’t see it quite this way. “There are two sides to issues like this,” he argues, “and in order to make funerals that are affordable, you need to have both oversight of the industry by the government, but you also need consumers that act with agency rather than being helpless victims.”

It is difficult, though, to think of any other purchase that is quite so unavoidable as paying for a funeral, nor one that demands decision-making at a time when emotional distress is a given. One way to feel empowered in the way that Slocum suggests is to lean, if you can, on your community.

Askia Toure and his two sisters, Sakina and Zahira, were able to turn to the Islamic Society of Greater Houston, Texas, when their mother died of uterine cancer in 2015. The society helped Sakina, who was the only sibling that lived close to her mother when she died, to wash and shroud her mother’s body according to Islamic practice. Two days later, their mother was placed in a plot she had pre-chosen. “That’s how we’ve been raised,” Askia said, “to bury each other with dignity as soon as possible for the least amount of pain or debt inflicted on those who are still here.” When families can’t cover the cost, the community that makes up the membership of the Islamic Society pitches in. Even before Askia’s mother died, the society’s members had contributed to cover the medical costs of her final illness, using a crowdsourcing page. 

Crowdfunding for the funerals themselves is now common. Just one site alone, Go Fund Me, boasts that every year it raises $330 million for some 125,000 memorials (a level of contributions that averages out at $2,640, about a third of the typical funeral’s costs). These sites are especially important for families like the Toures because black American households have less wealth than any other racial or ethnic group in the country. When a large, one-off expense like a funeral needs to be paid, the choice facing such families is often brutally simple: ask for help or sell the car.

Even with a community behind you, bargain-hunting is still important. Non-funeral home options are still limited—and, in fact, can often be even more expensive. You can, it is true, order a cardboard casket from Amazon for as little as $235, but then what? Most states have strict laws about where and how you can dispose of a body. Shopping around for professional funeral services is still the better option for most people. “You can find prices that range from $700 to $4,000 for the same basic service,” said Slocum. “The grief will come, but the terror [of financial ruin] doesn’t have to.”

Funerals are hard because they force us to manage a very practical matter that is simultaneously a profoundly emotional one—to make arrangements amid tumultuous feelings. One thing that can help is to have talked to a loved one before she dies about the kind of funeral she’d want. When it was time for the conversation that Jerry Burton wanted about his desire for a cheap send-off, his daughter-in-law, Melody Burton, a marketing and communications manager from Gresham, Oregon, was apprehensive. But it turned out to be a blessing, not a trauma. “You don’t get to talk about things that are so deeply personal like that very often,” she told me. “It was a beautiful time.”

Complete Article HERE!

The woman whose job it is to prepare people to die

She arranges everything, from finding long lost families to organising organ donation

by Abbie Wightwick

 

She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.

She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.

Watching her own grandmother have  “a beautiful death” inspired her to help others do the same.

“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.

As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.

Marie Curie spiritual care coordinator Claire Wretham with her grandparents Maura and John Brosnan. Maura’s death in 2016 inspired Claire to take up her post.

“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.

Penarth with everything from tracing lost loved ones to special religious or cultural requests, officiates at funerals and goes to local mosques,synagogues and church groups to talk about death and dying.

In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.

“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.

“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.

“People my age group see the world differently and approach things in a different way.

“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?

“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”

A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.

Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.

Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.

“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.

“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.

“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.

Whatever background people come from death and dying are still taboo subjects which Claire must help them face.

“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.

“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.

“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”

There is “no formula or prescription” for talking about death so Claire begins with a few questions.

“It’s about asking questions to get people to explore death or go away and think about it.

“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”

When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.

“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.

“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.

“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.

“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”

But she doesn’t push it if people don’t want to talk.

“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”

As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.

“I know what a dead body looks like, where you go after death and what the crematorium looks like.

“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.

“Most of the time people are worried about “what’s happening next and what about the pain?”

“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.

“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”

These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.

“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”

“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”

“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”

It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.

“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”

Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.

“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.

“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”

Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.

“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”

Complete Article HERE!

LGBTQ Elders Are More Likely to Be Socially Isolated, Suffer from Dementia Than Straight Peers

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A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

“As expanding research efforts continue to teach us more about the variability of Alzheimer’s and other dementias — for example by sex, race, genetics and exposure to environmental factors — the Alzheimer’s Association will fund, and encourage others to fund, more studies in LGBT and other diverse populations,” Carrillo added.

Increased Risk for Subjective Cognitive Decline Among Sexual and Gender Minorities
Few studies have investigated the symptoms and disease progression of Alzheimer’s and other dementias in the LGBT community.

To examine these associations, Jason Flatt, PhD, MPH, assistant professor at the Institute for Health & Aging at the University of California, San Francisco, and colleagues analyzed data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), a large phone-based survey led by the Centers for Disease Control and Prevention.

The study analyzed data from 44,403 adults aged 45 and older across nine states in the U.S. (Georgia, Hawaii, Illinois, Minnesota, Nevada, Ohio, Virginia, West Virginia, and Wisconsin) that participated in the 2015 BRFSS optional modules on the Healthy Brain Initiative, which included subjective cognitive decline and Sexual Orientation and Gender Identity.

Roughly three percent of participants (1,253) identified as a sexual or gender minority (SGM). Subjective cognitive decline was defined as self-reported confusion or memory problems that have been getting worse over the past year.

The researchers found that more than 14% of SGM participants reported subjective cognitive decline, significantly higher (p<0.0001) than the 10% rate among cisgender heterosexual participants. Even after adjusting for factors such as income, age and race, SGM participants were 29% more likely to report subjective cognitive decline.

More research is needed to understand why subjective cognitive decline may be higher in SGM individuals.

“Given that 1 in 7 adults who identified as a sexual or gender minority reported subjective cognitive decline, it is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” Flatt said. “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ+ populations.”

“While we do not yet know for certain why sexual or gender minority individuals had higher subjective cognitive decline, we believe it may be due to higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare,” Flatt added.

According to Flatt, less than half of SGM adults with SCD in the study talked to their health care provider about it. SGM adults with SCD were also more likely to report that they had to give up day-to-day activities (39% vs. 29%, p=0.003) and needed help with household tasks (44% vs. 35%, p=0.01) than cisgender heterosexual participants. Both groups were similar in terms of talking to their health care provider about their subjective cognitive decline.

First Study of an LGBT-Specific Alzheimer’s and Dementia Intervention
To advance research into Alzheimer’s in the LGBT community, Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, created the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA) study.

A multisite study in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is the first federally-funded study dementia intervention specifically designed for LGBT older adults with dementia and their caregivers.

The researchers had previously identified unique risk factors of LGBT older adults living with dementia through the first longitudinal study of this population (Aging with Pride: National Health, Aging, and Sexuality/Gender Study). Using longitudinal data with three time points (2014, 2015 and 2016), modifiable factors predicting physical functioning and quality of life (QOL) among LGBT older adults with dementia (n=646) were identified.

LGBT older adults living with dementia were significantly more likely to live alone (nearly 60%), not be partnered or married (65%), not have children (72%), and not have a caregiver (59%), when compared to older non-LGBT adults living with dementia. Previous experiences of discrimination and victimization (b=-0.19, p<.001) were negatively associated with QOL among LGBT older adults living with dementia. Socializing with friends or family (b=1.11, p<.05) was positively associated with QOL, and physical activity (b = 0.26, p<.001) were associated with better physical functioning.

As reported at AAIC 2019, Aging with Pride: IDEA includes a tailored approach in which trained coaches identify and modify challenging behaviors that are adversely affecting older adults living with dementia and their caregivers, either of whom are LGBT. The coaches delivered an individualized program of exercise, and behavioral and coping strategies designed to improve physical function, independence and QOL.

The exercise intervention is a low-impact physical exercise program including nine one-hour sessions over six weeks designed to improve physical functioning and maintain independence. The behavior and coping strategies include: techniques for working with LGBT-specific trauma, identity management and disclosure of their LGBT identities to providers and others, plus support engagement in the LGBT community and dementia services.

Testing of the intervention is now underway and will be delivered to 225 pairs of LGBT older adults living with dementia and their caregivers.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT older adults forgo seeking needed medical care,” said Fredriksen Goldsen. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”

Complete Article HERE!