Category: Philosophy of Living

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Does facing death teach us how to live a richer life?

“I’m a lot more compassionate now compared to what I was, and I’m softer in my approach.”

By Dilvin Yasa

In her lengthy career as a palliative care nurse, Elizabeth Barton has seen it all. From the guys who buy brand-new sports cars mere days before they die – “Just so they can say they had one” – to the long-lost relationships rekindled on deathbeds, little surprises her about the way we “do” death any more.

“Everyone’s different; those who have faith don’t appear to fear death as much and, of course, many speak of regrets,” says Barton. “But if there’s one thing that remains consistent about the final journey people make towards death, it’s that it’s always characteristic of the way they lived life.”

While many of us would rather not think about the reality that one day it will be our turn to be tapped on the shoulder (the fact that almost 50 per cent of Australians die intestate – that is, without a will – points to our avoidance), there is much that death and dying can teach us about living well, says Barton.

“It’s a time when people realise that the thing they value most is their human relationships. The most common lament I hear is how they wished they’d focused on spending more time with people. I’ve yet to hear a single person say, ‘Gee, I wish I’d put in more overtime at the office.’ It’s a message worth remembering while you’re still fit and healthy.”

“I FEEL LOVED EVERY SINGLE DAY”
Keely Bennett is a 43-year-old mother of two young daughters (aged nine and seven) who is battling stage-four metastatic breast cancer. In 2011, she was given two months to live.

Keely Bennett is a 43-year-old mother of two young daughters.

“The cancer had already spread all over my body – from my liver and lungs to my spine, collar bone and pelvis – by the time they found it in 2011. I was still on maternity leave with our youngest daughter so, like most mums looking after babies, I’d found ways to explain away the fatigue, breast tenderness and back pain I’d been feeling. When the nausea began, I thought it was an indication that our longed-for third baby was on its way, but nothing could have prepared me for the truth. My prognosis was two months – tops.

After 18 months we realised my battle might not end as quickly as doctors had initially anticipated. Among other issues I had chemo, an operation for brain lesions, a total hip replacement, a battle with a flesh-eating disease and radiation for a hip fracture. I didn’t have time to dwell too deeply on what my prognosis actually meant. Will-making took some encouragement by my oncology psychologist because I felt that by writing one, I was admitting defeat. I was not – and am not – ready to die.

The hardest part of living with a terminal illness is trying to find balance between being present here, today, with my family, but also planning for a future where I can no longer be by their side. I have to make the assumption that I won’t see my girls grow up, so it’s about asking myself on a daily basis, ‘Do I write them letters now for their 18th birthdays, or just go out with them and play?’

The cancer keeps finding new ways to come back, so treatment often feels like we’re playing whack-a-mole to buy extra time, but I’m focused on living today very, very well. Last year, we made a trip to Iceland, my bucket-list destination, and we’ve also taken the girls to Europe and to Disneyland. They were things we always planned to do ‘one day’, but now I know ‘one day’ doesn’t happen for everybody.

Obviously I’d change everything in a heartbeat to not have cancer, but knowing my time is limited has given me a gratitude and appreciation for what’s truly important in life. When healthy, many of us dream of a bigger house or a nicer car, but when you’re battling to live, you realise that the only thing that’s worth anything is love.

You work on your relationships, you make an effort to see more of your friends and family, and you become acutely aware of what you feel for others. More than that, you get insight into what others feel for you. I’ve always known I was loved, but now I hear it, see it and feel it every day. Yes, it’s unfortunate that this is often what it takes for people to freely say ‘I love you’, but what a joy to be able to hear and experience it.”

“FEAR CAN BE REDIRECTED”
Broadcaster and journalist Julie McCrossin, 63, was diagnosed with stage-four oropharyngeal cancer in 2013. Having celebrated five years of recovery, she’s taking the fight to a larger audience.

Broadcaster and journalist Julie McCrossin, 63.

“I faced the possibility of death head-on from day one – probably because my radiation oncologist said, ‘Julie, I expect you to live, but I won’t be surprised if you die.’ I respected him for that, but it still didn’t make my oropharyngeal cancer diagnosis any easier. What did was when he followed with, ‘Look, you’re in with a good chance – and you have a good support network.’ I looked over at my partner Melissa crying next to me and realised, ‘Yes, I may die, but I have to do everything I possibly can to stay alive.’

I felt I was engaged in a battle of survival, and what helped me get through it was thinking about my father, Robert, who was a World War II bomber pilot. I found radiotherapy devastatingly challenging, so I would focus on the fact my father survived 30 tours of duty in a position which had a very high death rate. By chance, I had 30 sessions of radiotherapy.

Once you’ve been touched by death, you’re never truly the same person again. I’ve just celebrated the five-year anniversary of my recovery, but the fear of recurrence continues. To counteract that, I’ve become heavily involved with patient advocacy, which has been a deeply positive experience. It calms me and brings me joy in ways I never could have imagined.

My battle with cancer has taught me that life is precious beyond words, and you’ll do anything to be able to stay and enjoy it for a little longer.”

Julie is an ambassador for Beyond Five – Targeting Cancer and TROG Cancer Research, and hosts the Cancer Council NSW podcast series The Thing About Cancer, which can be found at cancercouncil.com.au/podcasts. For more information about cancer, visit cancercouncil.com.au.

“I’VE LEARNT THAT JOY CAN COME WITH FORGIVENESS”

Irene Hellas, 46, lost her partner George to suicide in 2012, prompting a long period of soul-searching. She now works with Suicide Prevention Australia.

Irene Hellas, 46.

“Ten days before George took his own life, he began a period of what he called ‘spring cleaning’. It started with a furious reorganisation of his paperwork and finances, and ended with phone calls to family and friends to offload some of his most prized possessions. Looking back now, I realise he was getting his affairs in order before he went, but although I was rattled at the time, I just didn’t know how to ask the question, ‘Are you okay?’

When I went to his house and he didn’t open the door, it couldn’t have occurred to me what was on the other side. George had never shown any sign of mental illness. His death, and the way in which he went, derailed all of us.

My dreams died with George that night. We had planned to get married and start a family, but suddenly I was alone. I was angry at life, angry at myself and angry at George for leaving me. I began retreating inward and letting my feelings consume my life, so when a friend insisted I seek help, I reluctantly agreed.

I began working one-on-one with a psychologist, attended seminars, had some life coaching and read books like This Is How We Grow, by Dr Christina Hibbert. There’s a line in that book which quickly became my personal motto: “When life throws you in the mud, plant yourself and grow.”

It was a five-year period of soul-searching before I realised that all the signs were pointing to forgiveness and finding a new purpose. Once I was able to forgive George for what he had done to me by leaving the way he did, the release everyone said would eventually happen occurred. I began to feel a strong gratitude for George and the gift he had given me by being in my life for as long as he was.

Before George’s death, I had a lot of masculine energy; I was harsh and didn’t demonstrate empathy towards others the way I could have. I’m a lot more compassionate now compared to what I was. I’m softer in my approach, in touch with my feelings, and I stress a lot less about the things I know don’t really matter.

George’s death had me questioning my purpose for a long time, but ultimately I’ve found it. I now volunteer regularly, and I’m dedicated to working with Suicide Prevention Australia to help raise awareness that most suicides are preventable. Joy, I now know, is looking outward, contributing to society and helping others, and true joy can only ever start with self-love.”

Irene is a member of Suicide Prevention Australia’s Lived Experience Network. Visit suicidepreventionaust.org to find out how to get involved and access a comprehensive list of support services.

Complete Article ↪HERE↩!

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Meet the ‘end-of-life doulas’ guiding people to their death

By Emily Ford

Lizzie Neville is an ‘end-of-life doula’ who helps people prepare for death.

Doula is a term traditionally associated with childbirth, describing someone who helps a woman before, during or after childbirth.

But ‘death doula’ Lizzie, from Alton, Hampshire, was hired by Lowri Rylance, from Basingstoke, when her husband was diagnosed with terminal brain cancer.

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We took a snapshot of the last year of people’s lives – here’s what we found

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Sorry to be the bearer of bad news – sooner or later, we’ll all reach the end of our lives. Many of us are not keen to face this event, nor the time that comes directly before. It’s actually hard to say what is the bigger taboo, death or the personal care that most of us receive in our final days and weeks.

According to the Health Organisation, more than half of us die of an illness that requires some form of end of life care. Depending on your definitions, the figure can be much higher – a German study found it to be more like four out of five, which is in line with findings from my work in Scotland. Either way, care providers expect the absolute numbers of people in Western countries in need of end of life care to keep growing as populations continue to grow older in future.

As you might expect, older people have a higher chance of developing ailments that need care. The group of those experiencing a long period of dwindling physical and mental faculties due to frail old age or dementia is already rising: according to the death records that we examined in Scotland, for example, it doubled from 5.1% in 2001-02 to 9.7% in 2011-12, and dementia rates have continued to increase. The share of people undergoing shorter periods of decline, such as cancer patients, rose to 29.5% of all deaths in 2011-12. These numbers are slightly higher than many other countries, but roughly comparable.

Given these figures, you may wonder: what is life like at its end? Do people receive the care and support they need? The answer is, not everyone does. My colleague Iain Atherton and I mapped the last year of people’s lives in Scotland using a mixture of census data NHS data, and death records. Here’s what we found out.

Deprivation and being alone

We looked at all 53,517 people who died in Scotland within a year of the last census in 2011. About one in five were below pension age, half were aged 65-84, and just under a third were 85 or older. Every third person lived alone, and around 40% were widowed. Not the ideal situation when you need care.

The closer people were to dying, the more likely they were to have moved in with others. This varied by neighbourhood deprivation, however. In more deprived areas, 37% of people aged 70 and over – those most likely to need care – still lived alone, even in the last four weeks of their lives. In the least deprived areas, the rate was 25%. (In this age group as a whole, 18% of people died in a care home.)

To my knowledge, nobody has come up with directly comparable figures for other countries. From Eurostat data from 2014, though, we do know that 32% of over-65s in the EU live alone, for example, and that the UK is almost exactly in line with the average.

Let’s be honest: few people find the idea of living alone in old age appealing, no matter what their health status. In many cases, it goes hand-in-hand with depending on external services for care – strangers that invade the innermost sphere of your privacy. It’s probably one of the major reasons why people don’t like talking about this stage of life.

Consider new options

Yet if we want to make our last months and years of life less bleak, talking and acting is exactly what we need to do. As I have just discussed at a show at the Edinburgh Fringe on the subject, we should consider new options. We need to think outside the box, and ensure that we are the decision makers instead of being pushed back into the role of dependent.

Are retirement villages an option, for example? Or better still, housing complexes with people from different generations, where even a frail grandad can help the neighbour’s boy with his homework and still feel part of the community? Or can you band together with some friends, either in one house or in adjacent flats?

Bicep building.

In many cases, care decisions are made ad hoc, because an immediate solution is required. When your mother has had yet another fall and it’s clear she can no longer stay on her own and needs a care home bed in two days when she comes out of the hospital, there is no time to find the best home for her. You must take the place that is available.

Isn’t it funny that many of us tend to take out life insurance in case we die prematurely but don’t make provisions for the very likely possibility that we’ll need care? I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.

Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation. It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.

Complete Article ↪HERE↩!

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Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article ↪HERE↩!

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What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article ↪HERE↩!

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How These Med Schools Are Improving End-of-Life Instruction

It’s a shift toward care based on who the patient is and what he or she wants

By Bruce Johansen

While all medical students must witness a birth, being present for someone who’s dying is not a requirement. Dying has traditionally received little attention in medical school curricula. Interviewed by The Boston Herald earlier this year, Dr. Atul Gawande, surgeon, founder of the Massachusetts Coalition for Serious Illness Care and author of Being Mortal (also a Next Avenue Influencer in Aging) said his end-of-life training amounted to one hour of discussion during his first two years in medical school. He’s now part of an innovative effort to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.

What Matters Most at End-of-Life

“We’ve been wrong about what our job is in medicine,” Gawande writes in Being Mortal. “We think our job is to ensure health and survival, but really it is larger than that. It is to enable well-being.” Gawande emphasizes training students to discern what gives a person’s life meaning and then choosing a course of treatment based on what that information involves. It’s a shift away from a “fix-it” mentality, which focuses on prolonging life.

Gawande credits the transformation in his thinking to observing palliative care clinicians and geriatricians. On an episode of PBS’ FRONTLINE, Gawande explained that seeing his colleagues’ conversations with their patients taught him what he could do better for his own.

One of those colleagues, Dr. Jennifer Reidy, is chief of palliative care at UMass Memorial Medical Center in Worcester, Mass. and a University of Massachusetts Medical School professor. “What’s great about palliative care is that you can incorporate it into your practice no matter what specialty you are,” Reidy says.

Holding conversations about what matters most and “being able to treat people’s pain and other distressing symptoms that affect their quality of life are all things that any doctor should be able to do in their field,” she says. Reidy foresees eventual changes in training extended to entire care teams: nurses, nurse practitioners, social workers, chaplains and pharmacists.

Reidy was one of the first students to do a palliative care rotation during her training at University of Vermont’s Larner College of Medicine in the late 1990s. There she learned that the care plan should be driven by who the person is, not by the available technology or what was possible.

If a person is diagnosed with an incurable disease, she says, the essential question comes down to: How do you make the most meaningful use of whatever time remains?

According to Reidy, this often means “focusing on being with the people who they love, and being more in their ‘real lives,’” rather than in the hospital. Given the option to forego harsh, life-prolonging therapy, many take care of things left undone such as making amends or getting financial affairs in order.

“It’s so unique to whatever is meaningful for that person,” Reidy says.

Fired Up Students

While details of the curricula will look different, Reidy says students at each participating school will be taught complex communication procedures for breaking difficult news and having conversations about prognoses and end-of-life planning.

When it comes to communication, “no one gets a pass anymore,” says Reidy. What’s exciting to her is that students are fired up about these developments. “It really taps into their sense of meaning and purpose, and why they came into medicine in the first place,” she says.

Students are learning how to share information in chunks and in clear language, then to pause, listen, allow questions, allow silence, allow emotion and sit with someone’s sadness or anger.

“Then they’ll be able to figure out amidst all of this, what’s most important, what should we be focusing on,” Reidy says.

To ascertain what will bring well-being, Gawande promotes students learning to ask:

• What is your understanding of your illness?
• What are your fears and worries for the future?
• What are your priorities if time becomes short?
• What are you willing to sacrifice and what are you not willing to sacrifice?
• What does a good day look like?

Instead of prompting a conversation about death or dying, these questions get to the crux of: How do you live a good life all the way to the very end, with whatever comes?

Building Momentum

Tiffany Chen, a fourth-year University of Massachusetts Medical School student, is a “champion” of the project, says Reidy. Growing up in a multigenerational home with parents and grandparents, Chen was first exposed to palliative care during her senior year of college when her grandfather was diagnosed with Lewy body dementia at the end of his life. Two years later, when her grandmother was diagnosed with bladder cancer, Reidy was assigned to be her palliative care doctor. Chen credits Reidy’s care with changing her grandmother’s course of treatment and the “quality of her death.”

Combined with a love of helping people, that experience inspired Chen to pursue a medical career. She hopes to go into family medicine and eventually have a fellowship that’s integrated in geriatrics and palliative care.

Chen has taken leadership at her school, including being part of organizing a focus group of students interested in giving palliative care “more of a voice.” The new curriculum, she says, promises to make students “better equipped at baseline to have these conversations.” They’ll become more adept at reading people’s cues and better communicators overall, “by first listening,” she says.

“The biggest thing is actually practicing with someone who’s experienced observing, and then giving you feedback,” Chen says. At her school, a simulation lab and new training methods, including role-playing patient actors, are key.

Reidy feels hopeful that the consortium is part of a larger movement, noting that medical schools at the University of Rochester and Yale University have stepped up as leaders.

Massachusetts offers a new model — the first time each of a state’s medical schools have joined forces. It’s this collaborative element that is having an impact on her school’s administration, says Chen. “Prior to this, you’d talk about palliative care being very important and needing to be in the curriculum, but that’s true of a lot of things.” The partnership has created momentum.

Complete Article ↪HERE↩!

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How to honor and execute a loved one’s wishes is a conversation worth having

By Judson Haims

While I enjoy almost every day of my job, I am often faced with formidable challenges. One of the most difficult challenges I encounter is discussing plans for end of life with family members, clients and my contemporaries.

During the course of life, most people are required to handle many stressful situations. One of the most stressful and life altering is dealing with the passing of a loved one. Even when families have had the forethought to discuss a shared plan and how to honor and execute the loved one’s wishes, managing emotions, fears and anxieties of family and friends can be tenuous.

When a loved one’s life nears its end, so many areas need to be addressed. Often, it is easy to become overwhelmed and, thus, become immobilized. However, for those who have chosen to accept that the end will eventually come and have taken the time to develop a thoughtful plan, much emotional pain can be spared.

Some of the specific topics that need to be addressed in developing a plan include:

“It is obviously one thing to write about what you should do to initiate these difficult, but necessary, discussions. However, it is quite another issue to face the reality of what to actually say when you are facing a loved one and thinking about how best to break the ice with the topic of death and dying.”

  • Where does the person wish to die, at home, a nursing home, hospital?
  • Who will be a caregiver until the very end? Will it be a family member or friend? Will they have the fortitude to assist properly? Will it be a homecare agency or hospice?
  • What do they want as far as medical intervention, and who is going to make sure the passing person’s wishing are going to be honored and run as smoothly as possible? (Don’t assume a spouse or child will be the best choice.)
  • Establish advanced directives and medical and financial powers of attorney.

For those who have not yet had to experience end-of-life discussions and planning, you will eventually. Don’t shy away from the hard discussions.

It is important to make time and find a place to begin discussions revolving around end-of-life issues. Maybe a group situation might make it easier, such as during a time when families gather together. These conversations can benefit from the “safety in numbers” theory and tend to be more philosophical than one-to-one situations.

Generally speaking, there are four steps to expressing end-of-life wishes:

1. Ask the right question.

2. Record those answers.

3. Discuss among the pertinent people (i.e., family members, loved ones, doctors, attorneys, etc.).

4. File documents. Make certain the important documents are filed on your computer, given to medical providers, family and anyone else who may be involved in advocating.

For those who would like to learn about which documents should be in place when planning for end of life, here are some to consider: advanced directives, living wills, medical durable power of attorney and do not resuscitate orders. Here in Colorado, the Colorado Advance Directives Consortium has made available a document called the Medical Orders for Scope of Treatment, which is designed to help you convey what your wishes are for medical care at the end of your life.

It is obviously one thing to write about what you should do to initiate these difficult, but necessary, discussions. However, it is quite another issue to face the reality of what to actually say when you are facing a loved one and thinking about how best to break the ice with the topic of death and dying.

Should you choose to further educate yourself, there are a number of resources available to assist in starting a conversation: Conversation Starter Kit (the conversationproject.org), Aging with Dignity (www.agingwith dignity.org) and Take Charge of your Life (www.takechargeofyour life.org) are just a few that you may want to look into.

When end-of-life discussions take place among doctors, family and patients, all the participants tend to feel better. Medical treatment is usually handled with more professionalism and is more effective. And, perhaps the most difficult to measure, the stress of such a difficult situation is drastically reduced.

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