Category: Elders

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“The hardest part is seeing them deteriorate having got to know them”

— A Q&A on supporting people at end of life in care homes

With more and more people expected to die in care homes over the coming years, it’s more important than ever the professionals working there get the practical and emotional support they need to provide excellent end of life care.

By Dr Julie Watson

When we think about what it means to die at home, it can be easy to jump to one idea of what this looks like. That is, a rented or owned flat, house or other dwelling. But for a growing number of people, ‘home’ at the end of life means the communal setting of a care home.

Right now, 20.5 % of all deaths and 34.6% of deaths of people over 85   happen in care homes. The number of people over 85 is set to increase by 90% by 2048, meaning this figure is only going to rise. The median length of stay in a care home is now 15 months, which means deep relationships form between staff and those in their care.

Good palliative care focuses on quality of life, and also accepts dying as a natural process. It’s vital people working in care homes get the support they need – both practical and emotional – in order to be able to give people in their care the best end of life experience possible.

I spoke to Senior Carer, Loren Hunt, who’s worked in a care home for several years, about what this looks like for her.

Q: First things first, could you describe a typical day?

We help the residents to get up, get dressed and start their day, have breakfast and then see what activities they’d like to do. Throughout the day, we help them with things like going to the toilet and if they need assistance with eating and drinking. We check their general well-being, make sure they’re comfortable and safe.

In the evening, we help them get into their pyjamas, washed and ready for bed. It’s personal care, but also a lot of general life support and making sure they’re happy and comfortable.

As a Senior Carer, I’m responsible for delegating tasks to the team as well as caring for people directly.

Q: What’s the best thing about working in a care home?

My favourite part of my job is just getting to know the residents and building that friendship and connection with them. I enjoy helping people to get the most out of life… Having a dance and being silly, making them happy. Trying to get them to participate in things. I think there’s a perception that if you go into a care home, you just sit in a chair all day and that’s that. But it’s not like that really.

Some of the people we care for have had such interesting lives. We’ve got so many residents who have done a lot of travelling and lived abroad and have wonderful stories. So it’s really nice just having chats about that with them as well.

Q: What’s the most challenging part?

We’re taught to not get too connected to the people in our care so that we don’t get upset when they do pass away. But when you do see people deteriorating and then getting to that point in life where they’re reaching the end, I think that’s the hardest part.

It can take months and months, or it can be really, really quick. But as soon as you realise it’s coming, it’s sad. And of course, when they do ultimately pass away, it is upsetting because as much as you’re advised not to get too emotionally attached, you can’t help it really.

I feel like you wouldn’t be doing your job as well as you could if you didn’t get connected to the people you care for.

Q: What are the challenges of caring for someone who’s approaching the end of their life?

If you’ve known someone for a while, it can be hard to adjust to their new needs because you get so used to them being able and not needing as much support. You have a routine together, so when it suddenly changes you have to adapt and think: ‘Ok, how can I now best support this resident now?’

And it is a lot of learning to do, and there may not be much time. It would definitely be helpful for more training on that side of things. It’s the area where I personally feel the least knowledgeable. Because it’s so different from person to person, and there is no set of rules which say: ‘OK, when this happens, you do this’, because everyone is different.

Q: Could you give an example?

One area which is often spoken about is eating and drinking at the end of life. There’s this perception that as soon as someone’s palliative, they don’t need to eat proper food anymore. That fluids should be thickened, or food should just be things like ice cream and yoghurt.

But that’s not necessarily true for everyone. For some people it might be, but others might manage to eat and drink fine until the very last stages. Or they might just want a taste of their favourite food. There’s nothing to say that if they want a taste of salmon or a roast potato, they can’t have that. They might not have a lot, but it means they’re still able to have that pleasure.

I think carers are often scared, thinking ‘what if I give them this piece of potato and they choke?’ so it feels safest to default to the ‘safest’ option. To have some help with confidence so that, for example, if someone does ask for a bite to eat, you can use your judgement and understand how to make it as safe as possible.

Q: Do you experience the very end of someone’s life very often?

Yes, people will quite often die in the care home so that’s something I’ve experienced quite a lot. There have been a few instances where people have suddenly become really unwell and been taken to hospital and died there.

It’s not as nice when you don’t really know what happened. You don’t know if their death was nice or not because they weren’t at home. And from what we hear, I don’t think it’s usually as peaceful as it is when they die in the care home, in their home.

Q: What does giving someone a good death mean to you?

I think what really separates the really nice death experiences that I’ve had from the not so nice ones is just being able to have that personal element to it. When you’re able to do all you can to make sure they’re happy and comfortable in their last moments.

An expected death makes it a lot easier to make sure it’s a nice one. But even when it’s unexpected, I think it’s about the resident having everything they need in place, such as their medications – so they remain peaceful and not too distressed.

It’s also having people they know around them. It makes a huge difference when staff who’ve known the residents for years can be with them as they die, and can put like their favourite music on or sit and just have a chat about things if they’re still able to talk. We’re quite lucky that we have quite a low staff turnover. A lot of our staff have been there for 10 years or more.

A not so nice death would be obviously if they didn’t have all their medication in place to support them, because I think the worst thing is when a resident gets really distressed and there’s nothing you can do about it. But also, if they’ve never met the person who’s with them, and if they didn’t know their likes and preferences. If they weren’t able to sit and have a chat with them and support them in their weakest moments.

Thinking about that person as a human being who needs connection, just as we are all human and seek and build those relationships. It’s very special to be there when someone’s dying, but when you feel uncertain, unsure or like something’s not right for them, it can be very hard.

Complete Article ↪HERE↩!

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Hospice care for those with dementia falls far short of meeting people’s needs at the end of life

— An end-of-life care specialist reflects on how Medicare’s regulations for enrolling in hospice exclude many dementia patients who need it the most

by Maria Silveira, M.D., M.P.H., FAAHPM

Jimmy Carter, who chose to forgo aggressive medical care for complications of cancer and frailty in February 2023, recently reached his one-year anniversary since enrolling in hospice care. During this time, he celebrated his 99th birthday, received tributes far and wide and stood by the side of his beloved wife, Rosalynn, who died in November 2023.

In contrast to the former president, his wife, who had dementia, lived only nine days under hospice care.

Palliative care physicians like myself who treat both conditions are not surprised at all by this disparity.

Hospice brings a multidisciplinary team of providers to wherever a patient lives, be it their own home or a nursing home, to maintain their physical and psychological comfort so that they can avoid the hospital as they approach the end of life.

Hospice is not the same as palliative care, which is a multidisciplinary team that sees seriously ill patients in a clinic or hospital to help them and their families with symptoms, distress and advance care planning.

Strikingly, only 12% of Americans with dementia ever enroll in hospice. Among those who do, one-third are near death. This is in stark contrast to the cancer population: Patients over 60 with cancer enroll in hospice 70% of the time.

In my experience caring for dementia patients, the underuse of hospice by dementia patients has more to do with how hospice is structured and paid for in the U.S. than it does patient preference or differences between cancer and dementia.

A black and white historical photo of a smiling Jimmy and Rosalynn Carter on board their campaign plane.
Rosalynn and Jimmy Carter campaign for the presidency in 1976.

The role of Medicare

In the U.S., most hospice stays are paid for by Medicare, which dictates what hospices look like, who qualifies for hospice and what services hospices provide. Medicare’s rules and regulations make it hard for dementia patients to qualify for hospice when they and their families need support the most – long before death.

In Canada, where hospice is structured entirely differently, 39% of dementia patients receive hospice care in the last year of life.

The benefits of hospice

The first hospice opened in the U.S. in 1974.

Medicare began assessing the potential benefits of covering hospice care during Carter’s administration. The service gained popularity after Congress formalized a payment structure to reimburse hospice providers through Medicare in 1985.

At the time, lawmakers were responding to the realization that the cost of care at the end of life was the fastest-growing segment of Medicare’s budget. Most of those expenses covered costs for hospitalized patients with advanced incurable illnesses who died in the hospital after spending time in intensive care units.

Congress believed hospice would not only give seriously ill Americans an alternative to a medicalized death but would also help control costs. So it required hospices to provide holistic care to entice people to enroll in this new option.

The new Medicare coverage allowed hospice care to follow the patient wherever they lived, at home or in a nursing home. It would support families as well as patients.

These remain among hospices’ core values to this day.

A hospice nurse discusses how end-of-life care can become a life-affirming experience.

Impossible trade-off

In exchange, people enrolling in hospice would have to forgo other kinds of care, such as seeing specialists or being admitted to a hospital.

But letting go of specialists is a nonstarter for many patients.

Researchers have found that people with life-limiting illnesses like dementia are half as likely to enroll in hospice when they want to continue treatments they cannot receive in hospice.

Psychiatrists and geriatricians who treat dementia, and the psychologists, nurses, social workers and others who support them, are invaluable to families struggling to manage a dementia patient’s disruptive and sometimes violent behavior. They adjust and rotate medications such as antidepressants, antipsychotics, anti-epileptics or sedatives to help their loved one experience less anxiety, agitation or depression as their memory fades.

These adjustments are the norm for many patients with dementia who are particularly prone to side effects such as agitation or drowsiness. Specialized dementia teams are difficult to give up in exchange for hospice clinicians who are generalists following a protocol and adhering to a short list of approved medications.

But that is what Medicare currently asks these families to do.

The best of both

Hospice advocates and palliative care providers like myself believe dementia patients should have access to both specialists to provide expert guidance and hospice providers to support the care at home.

So-called concurrent care is the standard of care for children facing life-ending illness, as well as for patients in the Veterans Health Administration. There is evidence that the concurrent care approach helps patients and, ironically, saves money.

For around a decade, the Centers for Medicare and Medicaid Services has been studying alternative models for hospice that include concurrent care for Americans covered by Medicare. The agency is proposing to study the issue a bit longer. However, more studies will not bring relief any time soon to the 7 million Americans with dementia and their families.

Criteria for hospice

Even when dementia patients and their families are willing to forgo specialists and hospitalization, they are unlikely to meet Medicare’s stringent criteria for hospice, which were designed to limit hospice to patients who are expected to die within six months.

It’s so difficult to qualify for hospice under a dementia diagnosis that one of my colleagues is known for saying, “If you want to get a dementia patient into hospice, find a cancer.”

Medicare’s criteria require that people with dementia not only depend upon others for help with toileting, transferring, bathing, walking and personal hygiene but also that they be bedridden, incontinent, minimally verbal and have a terminal complication of dementia such as aspiration pneumonia, recurrent urinary tract infections, significant weight loss, or bed sores.

These complications typically occur only in the most advanced stages of dementia and are less likely when people receive quality care at home.

More importantly, Medicare’s hospice benefits do not provide patients with dementia and their families the support they need most – hands-on care.

Most people are shocked to hear that, aside from providing a bath aide a couple of times a week and a home health aide for brief periods to give a family caregiver a break, hospice does not provide the hands-on care that dementia patients – and, frankly, anyone who is in hospice – requires.

Monitoring, toileting, hand-feeding, repositioning, ambulating, medication administration and wound care are left up to family caregivers.

Families of people with dementia must either sacrifice their personal well-being and livelihoods to care for a loved one at home, hire a professional home health aide, which costs from US$30 to $50 an hour, or place the loved one in a nursing home. The latter is paid out of pocket unless patients qualify for Medicaid. And hospice care, as currently structured, does nothing to help with that.

My heart breaks for people like the patient with early dementia I met recently. His daughter-in-law – his sole caregiver – requested he be enrolled in home hospice, only to find out that not only did he not qualify for hospice, but that hospice would not provide the hands-on support they needed.

“So, unless we can afford to pay for an aide or place him in memory care, I’m all the hands-on help he’s got?,” she asked. “I’m afraid so,” I answered.

Given this impossible choice, it’s no surprise that Rosalynn Carter only entered hospice near the end of her life.The Conversation

Complete Article ↪HERE↩!

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3 Things to Do If You’re Terrified of Your Parent Dying

— If watching them age is causing dark-thought spirals, here’s what a psychologist recommends.

By Cathryne Keller

My deepest fears love to show up right as I’m trying to drift off to sleep—anxious brains are fun like that—and lately, a recurring theme in my after-dark intrusive thoughts is my mom dying. I’ve been straight-up terrified of losing her since I was a little girl (for a bunch of sad, childhood-trauma-related reasons I won’t hit you with here, this topic is dark enough already). But I haven’t been this anxious about it in years, and I know why it’s haunting me again: I’m watching her age.

She’s in her 70s now, and while she’s relatively healthy, active, and sharp (shout-out to my Wordle buddy), there’s no getting around the fact that her body is getting older, and she’s not going to be around forever. In other words, my formerly irrational fear of suddenly losing her isn’t all that far-fetched. And I know—from talking to other friends with older parents, listening to mental health podcasts like it’s my job, and using common sense—that my experience isn’t unique.

Parents are typically the first adults we attach to as babies and who we first rely on for survival, so of course the thought of them dying is going to bring up bone-deep, primal terror for a lot of us. And while an occasional “My parent is going to die!” freak-out might feel manageable, if that fear is regularly causing you to spiral (or, like me, lose sleep), it’s worth finding ways to manage it.

That’s why I asked Beverly Ibeh, PsyD, a therapist at Thrive Psychology Group who specializes in anxiety and grief, for her best advice on what to do if you’re overcome with anxiety and existential dread at the thought of losing your aging parent(s)—both so you (and I) can feel a bit better now and in the future.

Examine your underlying fears—and then fact-check them.

Often, our biggest fears stem from imagining the worst-case scenario instead of the likely one. “Feelings are usually never logical, so make sure to understand where your worries stem from, and then look into how based in reality they are,” Dr. Ibeh says. Yes, your parent(s) will die at some point, as we all will, but your anxiety about that fact likely comes from what you imagine will happen after they pass away, she explains—and fact-checking this fictional future can make it look less bleak.

If I question the root of my mom-death fear, I can see that it’s not just about the fact that I won’t be able to call, hug, or do crossword puzzles with her, but that, without her on the planet—the only person who accepts me fully, 100% of the time—I won’t be okay. The thing is, I don’t know that, because she’s still here. But I do have plenty of evidence to the contrary: I know that people have been losing their parents and surviving the grief since the beginning of time—and that I’ve gotten through other very dark, seemingly hopeless periods.

If you, too, are terrified you won’t be able to cope, take some time to think about (or write down) other losses you’ve survived in the past or personal strengths that make you resilient to prove yourself wrong, Dr. Ibeh recommends. Or maybe your underlying fear is more about losing emotional support. You can challenge that too: Think of other people in your life who you know you can lean on, and remember that you can talk to a therapist for help if you need it, she adds. Again, the idea here is to ask yourself what you’re really scared of, and then “follow the thread of anxiety-fueled what-ifs and answer them with logic and reasoning, using real-life solutions,” Dr. Ibeh says.

Focus on what’s within your control.

Once you get curious about your anxiety, you may also find that you’re worried about specific things you’ll miss about your parent (see: crosswords and hugs above) or logistical stuff, like their end-of-life wishes. That’s why, Dr. Ibeh says, it can also be helpful to ask yourself: “What meaning are you attaching to the loss of your parents as it pertains to how your life will change, and what is within your control now?”

Are you devastated by the idea of never hearing their voice or enjoying your favorite home-cooked meal that only they know how to make? Dr. Ibeh suggests starting to hold onto those special moments in the present, so you can rely on them in the future when you’re grieving. Maybe you can download some of their sweet voicemails or take more videos of them when you’re hanging out, for example, or ask them to teach you how to make their impossibly tender dumplings. There’s no way to replicate hugs, of course, but you can be mindful of savoring them now, so you can seek comfort in those memories when you miss your parent dearly, she says.

As for more practical matters, like what’ll happen to their possessions when they’re gone or their medical care and burial preferences, tackling them head-on is the best way to calm your fear, according to Dr. Ibeh. Ask them if they have a will, for example, or if they have strong feelings about leaving certain belongings to specific family members. If they don’t have an end-of-life plan, you can help them make one—the National Institute on Aging’s free Get Your Affairs In Order Checklist is a great place to start. (They can also consider buying a “Departure File” for $100 from Good to Go, which will help them document everything from what they want on their tombstone to the passwords for their social media accounts.) Having a game plan can ease your uncertainty and, therefore, your anxiety, Dr. Ibeh says.

Connect with them while you can.

“Anxiety takes us away from our present lives and keeps us ruminating about our future to the point that we may miss core memories that will help us keep the spirit of our loved ones alive in our minds and hearts,” Dr. Ibeh says. So when you start dwelling on losing a parent, it can help to think about how you’ll feel when they’re gone: Will you be glad you spent so much time obsessing about their death when they were still here? Or as Dr. Ibeh wisely puts it: “Is there a chance you’re missing out on the life in front of you by focusing on the life you’re afraid you will have in the future?”

If the answer is yes, she recommends “creating new memories with your parent that will outlast their physical presence”—maybe you plan a weekend getaway at a cozy cabin in the mountains if you both love to hike, or schedule a monthly call where you catch up and ask them about things you’ve always wanted to know, like what their college experience was like or how they got through their first big heartbreak. “You can also practice gratitude for the things you love about your parents and the relationship you share,” she adds.

Even if you’re not exactly close with them, focusing on the present is still the best move. If the relationship isn’t so great, you may want to think about how you can improve it (or come to accept it) now, so you’re not left with the weight of unresolved conflict when they’re gone, Dr. Ibeh says. That might mean setting boundaries so you can enjoy your time together while protecting your mental health or talking to them—and/or a therapist, if you don’t get anywhere—about your feelings so you can be more at peace.

I interviewed Dr. Ibeh two months ago and have been implementing some of her advice ever since. No, I can’t say that my mom’s eventual death never haunts me at night, or that my heart rate no longer kicks up when I think about it. But by challenging my fears with facts, trying my best to savor the best parts of our relationship (and accept the hard ones), and working on my anxiety in therapy (let’s be real), I now feel an underlying sense of peace that wasn’t there before. When that awful day comes, I probably won’t be okay initially, but I will eventually, because the things I’m most scared of losing (my memories, our connection, my sense of her) can never leave me.

Complete Article ↪HERE↩!

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As doctors, we are failing to put patients’ needs first, causing harm at the end of life

— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason

‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’

My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.

A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it.
Zachary Tait
Manchester

I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.

We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes.
Rupal Shah
Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now

Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.

We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying.
Jo Fisher
Brampton, Cambridgeshire

In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.”
Rebecca Howling
Toft, Cambridgeshire

As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence.
Name and address supplied

Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.

My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.

I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry.
Fiona Wallace
Sheffield, Tasmania, Australia

I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them.
Dr Jane Lovell
Ashford, Kent

Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.

Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.

I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article.
Dr Stephen Docherty
Consultant radiologist, Dundee

I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.

When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.

I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention.
Dr Riaz Jetha
London

Complete Article ↪HERE↩!

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All that is true about aging is illuminated on a walk

By

I was out today in the early morning walking with a close friend of 64 years named Shelley Adams. Despite some huge losses over time, she is always overtly positive. I don’t normally like this in a person. I make a rare exception for her. We hike several times a week beside our local creek, now a twisting, flowing stream that rushes over rocks, mint and twigs.

Rainer Maria Rilke was only partially right when he wrote that “life holds you in its hands and will not let you fall,” because both Shelley and I, like all older people, have been dropped. But life also at some point pulls you back to your feet. What do you do in between, during times of loss or general dread? My friend Tom Weston, a Jesuit priest, always reminds me, “We do what’s possible.” I hate that.

Okay, fine: What is possible? The practical, simple and kind. We work, love and help others as best we can, gawk at nature, rest. Is that it? Pretty much.

This is a little disappointing, but age teaches us that kind, simple and practical are enough, even in the face of the worst things we’ve lived through: suicides, mental illness, odious leaders, sudden death. My friend Don was called one day by an aging and suicidal friend. His friend asked, “What is the point of it all?” After a moment, Don replied gently, “Mornings are nice.” And, wildly, it was enough. His friend improved.

I cannot hike the uphill trails here anymore because of my hip, so we do what’s possible: take four 10-minute laps back and forth along the creek. Everything that is true about aging appears to me on these walks.

On our first lap, Shelley and I catch up. We’ve always been talkers, readers, movie lovers. What was true about us at 6 years old is true about us now. We gossip, laugh a lot, quibble. We looked so similar as small kids, with green eyes and white-blonde hair. We still do. We’re built about the same. I’m a bit taller and smaller-boned, but otherwise we could be sisters. And like sisters, we can annoy each other, and weaponize silence. Families, sigh.

I grew up at her house. Her mother was my other mother, who saw how amazing I was on the inside, not just how much better I could be doing. Shelley and I went through childhood and puberty together, played competitive tennis for years as partners and then didn’t see each other much for 40 years. We raised kids, buried parents; sad, scary things have happened to us both, as they have to everyone by a certain age. Now, we’re slower, less busy, a bit goofy.

For instance, this morning, while searching for the word “coaster,” the closest I could come up with was “coffee pad.” She laughs so hard when I say this, she has to cross her legs, and then almost loses her balance.

By the second lap, our bodies have loosened up, and we talk a bit less and look around a lot more, and listen. The creek is the place where the water and the land are in constant conversation. My vision is often blurred by dry eye, but there is a grace to myopia: I’m less fixated.

We walked this morning in raincoats because it was drizzling off and on, even as the sun shone through faintly. In my family, we always announced during a sun shower that it must be a monkey’s birthday somewhere. In Akira Kurosawa’s “Dreams,” a mother tells her child, “The sun is shining through the rain. This is the time when foxes have their weddings.”

Like most old friends, we can bobble along without talking for stretches. I listen for the soft orchestral music of the woods on either side of the path. After scanning the illuminated green scrim of trees ahead and far away, I pull closer in on individual trees, all arms and elbows and long legs. The trees just stand around, as is their wont. The drizzle plays them. What instruments are they? Mostly woodwinds, maybe oboes, some flutier, and then dark, dark trees, like kettle drums, like patches of life.

Because we go back so far, Shelley and I know each other’s souls and shadows, and each other’s major screw-ups, and there is comfort in this. Also, we have made mistakes with each other that have felt like betrayals. This happens in families. We have gotten so mad that we have ditched each other on the trail and shouted to each other’s back, “Don’t you dare walk away from me.” Actually, that was only me. We take breaks, make up.

By the third lap, my hip has begun coughing quietly to get my attention. It would like to go home now. My vision is even more blurry because of the drizzle and thin light, added to the dry eyes. This is part of what it means for me to be alive still, the blinky vision. Paradoxically, I see more. Now, instead of sharp focus, there’s an appreciation of shifts in light that reveal the mutability of the world. The light sometimes changes minute by minute, and with it we perceive changes in the energy around us, above us, inside us. It moves our attention outside our squinty, judgy little selves.

We point out dark-eyed Oregon juncos to each other and finches, the males with their glorious red headdresses and chests, the females in their faded brown bathrobes. We talk about spiritual things and people we hate — as she puts it, “people we’re allergic to, bless their hearts.’” We talk about our scattered minds: This morning, I was struggling to read some tiny print in a book, and, without thinking, I touched the printed page to pinch it out and make it bigger. Eeesh, I thought: Scary! But I was gentle with myself about it.

My hip has really begun to ache by the final lap. We talk and limp along. Easily half of the people in our conversations have passed on, all four parents, both of her younger siblings, dearest friends. We know that death won’t be so hard. We’ve seen many people through the end of life. It’s never dramatic, like Snagglepuss staggering around onstage clutching his throat. It can be rough, and then one slips over gently to whatever awaits. My old pastor told me it is like going to bed on the living room floor and waking up in your own bed.

Age is giving me the two best gifts: softness and illumination. It would have been nice if whoever is in charge of such things doled them out in our younger years, but that’s not how it works. Age ferries them across the water, and they will bring us through whatever comes.

Complete Article ↪HERE↩!

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New Zealand’s ‘coffin clubs’ bury taboos about death

Kevin Heyward poses next to his Austin car coffin that he made at the Coffin Club’s workshop

By Ryland JAMES

It’s a task of grave importance, but there’s nothing to stop New Zealanders having a laugh as they work on DIY caskets in the country’s “coffin clubs”.

Elderly club members meet for cups of tea, a bit of banter, and to literally put the final nail in one-of-a-kind coffins that will carry them to their eternal resting place.

Kevin Heyward plans to be sent off in a box resembling a vintage Austin Healey.

Registration plate: DEAD1A.

Kevin Heyward’s Austin car coffin is fully equipped with a mock steering wheel, windscreen, rubber wheels, wooden mudguards, painted-on side doors, and wing mirrors

“My daughter came up with the idea,” the 79-year-old car enthusiast said with a grin, brushing sawdust off his overalls.

It’s fully equipped with a mock steering wheel, windscreen, rubber wheels with metal hub caps, wooden mudguards, a bonnet, painted-on side doors, and wing mirrors.

“The trickiest part was getting the mudguards lined up because of their curve,” Heyward told AFP at the workshop of the Hawke’s Bay Coffin Club in Hastings.

The hefty casket, which can be carried with six wooden handles, even has working headlights. The batteries, naturally, are currently dead.

“It weighs quite a bit and I’m a big man,” he said.

“I have said to my six grandsons they had better start weight-training, because they will be carrying it one day,” Heyward chuckled.

“There is a bit of humour in this car.”

The club is one of four that have sprung up around New Zealand, with the first opening in 2010 in Rotorua on the country’s North Island.

Some clubs boast as many as 800 people on their books, though one admitted “not all of them are above ground”.

At the Hastings club, Jim Thorne, a spritely 75-year-old motorcycle fan, used his skills as a cabinet maker to build a casket painted with a motorbike track. It’s stored in his garage, alongside a collection of motorbikes.

Thorne said most friends “are a little aghast and say ‘why are you doing that?'” when they hear about his coffin-making hobby. 

“Apart from the fact that I like the look of mine, it’s my input into my final days.”

– ‘Dying to get a coffin?’ –

“There is a certain mindset in some people that this is almost a taboo subject that they find very, very difficult to talk about,” Thorne said.

“They tend to overcome it. At the end of the day, it’s a reality of life, unfortunately.”

Elderly club members meet for cups of tea, a bit of banter, and to literally put the final nail in one-of-a-kind coffins

He breaks the ice with newcomers by asking: “Are you dying to get a coffin?”

But the club’s atmosphere is far from morbid.

Banter flows during the morning tea break as members chat over scones and hot drinks.

“We’re a bit unique, but we are happy. There are always lots of jokes,” said club secretary Helen Bromley.

Most members are seniors. The club provides a space to open up about death and dying during weekly meetups.

“I think everybody here has accepted that they are going to die, whether they’re decorating their coffin or helping others with theirs,” Bromley said.

“We’re a club that tries to empower people to plan their coffin, to plan what happens if they get sick.”

She said some members want to spare relatives the burden of meeting rising funeral costs. The club will also build and decorate coffins for grieving families. 

Coffin Club organiser Helen Bromley works on the lining of a coffin

On average, a funeral in New Zealand costs around NZ$10,000 (US$6,200), according to the national funeral directors association. 

Coffin prices range from NZ$1,200 to NZ$4,000.

– ‘Remember Me’ –

For a NZ$30 membership, the Hastings club gives each new member a pressed-wood coffin in one of three designs, ready to be decorated.

The coffins come in four sizes, each costing around NZ$700, extra for paint and a cloth lining.

During a tea break, Bromley announced that a member suffering from cancer was in intensive care after a fall. Her brother had asked the club to finish her coffin as a priority.

The club also builds ash boxes, which they sell to the local crematorium, and small coffins for infants, which they give away.

“The midwives and nurses at Hastings hospital have asked us to not ever, ever stop making the little coffins for them,” Bromley said.

“We donate to whoever. If there’s a miscarriage at home and they want a coffin, we donate.”

Members help knit blankets, teddy bears, pillows and hearts to go in the infants’ coffins.

Committee member Christina Ellison, 75, lost an infant daughter in 1968 and said she was comforted to know the club helps other families grieving the loss of a child. 

“The little baby coffins are so beautiful and done with so much care. The knitting that the ladies do is incredible,” she said.

Ellison is moving away soon and plans to take her coffin, which has been painted a blue-grey colour called “Remember Me”.

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My dad’s assisted death was a parting gift.

— I wish I’d said so in his obituary

Kelley Korbin wished she’d included the fact that her father had a medically assisted death in his obituary.

In writing about death, we use euphemisms that sometimes obscure how we actually feel

By Kelley Korbin

My father’s death was something I’d worried about for decades — probably since I learned that smoking kills. But years of pre-emptive angst didn’t prepare me for the crushing heartache that landed like a rock on my chest when he finally died from lung cancer at 82 last year.

I couldn’t have known how the deliberate way he chose to die would become part of his legacy. Or that Mom’s reticence would prevent me from sharing with the world that he had medical assistance in dying. I had hoped to honour my father with an obituary that inspired readers to live harder and love bigger. And, I wanted to package his life with all its complexities and idiosyncrasies into an honest tribute that — if you read between 20 column inches — revealed his authentic nature.

For example, I wrote he regaled us with tales that we never tired of hearing, that he was never one for small talk and that he was his most relaxed self when he travelled. I’ll decipher: Dad always prefaced his (albeit entertaining) stories with, “Stop me if you’ve heard this,” and then launched right in with nary a nanosecond pause for interjections; he did not suffer fools and, without a margarita in hand on a tropical beach, he could be pretty set in his ways.

The one thing I didn’t want to couch was how he died.

I’m reticent to use a hackneyed term like transformational but it’s the only one I have to describe what we experienced. Medical assistance in dying spared Dad many indignities and, for the family he left behind, knowing in advance the exact day and time of his death provided us with a chance to say everything we needed to say and send him off steeped in the love he deserved.

As I watched Dad take his last peaceful breath (not a euphemism, it really was), I was flooded with gratitude for living in a country where my father had the option to forgo a long, slow death. I wanted to share it with the world.

The federal government wants another pause in allowing medical assistance in dying (MAID) requests from those suffering solely from mental illnesses. CBC’s Christine Birak breaks down the division among doctors and what it means for patients who have waited years for a decision.

So, I asked Mom.

“Can I write that Dad had MAID in the obituary?”

“I’d rather you didn’t.”

I’m not usually one to demur. But this was my mother — just a day after her husband of 60 years had died. Plus, obituaries cost a bundle, and she was paying.

“OK, no problem,” I said and went on the hunt for a breadcrumb to drop in the obit. Dad’s death was neither “sudden” nor “unexpected” or “tragic,” leaving me unsure of what coded language to use for assisted dying.

In the end, I settled for the truth: Dad died surrounded by his family as the sun set.

Two women and a man pose for a selfie on a rooftop with palm trees in the distance. They’re all smiling.
Korbin’s parents, David and Judi, were married for 60 years.

For the next year, I regretted what felt like a lie of omission. Then, on the first anniversary of his death, Mom said to me, “It’s taken me a while, but now I see that your dad traded a few months of his life to give us a beautiful death.

She was right.

Dad had always been generous with material things, but his deliberate death was perhaps his greatest gift. Watching him make his difficult decision with grace and equanimity was the bravest thing I’ve experienced. We have always been a close family, but I don’t think any of us, even Dad, could have predicted the way sharing this rite of passage would bring us closer. Even a year after our patriarch’s death, I can feel a deeper intimacy between those of us he left behind.

Beautiful indeed.

I took my mom’s opening to probe further.

“Why didn’t you want me to put MAID in the obituary? Were you worried about the stigma?”

“Me? Stigma? Not at all,” she said, “I just didn’t think it was relevant.”

And then she added, “But I do now. So you go and tell the world about your father’s big, beautiful, assisted death.”

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