Tag: Advance Directives

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I’m a Funeral Director. And Yes, My Stories Are Insane

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funeral director

For something that literally happens to everyone, death is a remarkably taboo subject in American culture. It makes some sense, though. Who wants to think about the lights going off permanently, let alone deal with the actual logistics of dying?

That’s why I’m here. I’m a funeral director. I help you with the things you don’t want to deal with. No, it’s not exactly like Six Feet Under. Yes, you have to go to school to be a funeral director, at least in New York State. Everybody always seems surprised when I tell them that — maybe they think any guy selling bootleg Yankees hats off the street could throw on a suit and start handling funerals and grieving families.

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That’s ridiculous, for a lot of reasons. Not only are you dealing with dead bodies, which, beyond being frightening to most people, can also be host to all kinds of diseases, but there’s also the governmental red tape and transactions that could see tens of thousands of dollars changing hands. It’s certainly not a career someone could jump into blindly and excel at… especially given some of the situations I encounter regularly. These are just a few slices of what it’s like to be a New York City funeral director, one of the most overlooked, but essential, careers a person can have.

A normal day is never what YOU think of as a normal day

>For starters, I want to clear something up: every now and then I’ll run into someone who thinks it’s crazy that funeral directors charge money for what we do. It’s not. We do the job that other people can’t or won’t do. We provide a valuable service to the community. We’re not looking to rip you off, we’re just looking to be compensated for the work we do. Most people don’t have to deal with questions about whether they should make money in exchange for working hard, but death can elicit some strange behavior in the living.

My normal workdays are filled with events most people won’t ever experience in their lives. Picking up and tending to dead bodies, dealing with grieving families, taking funerals out to churches and cemeteries. To put it into perspective, remember that day at work when you spilled coffee on your pants and had to walk around with a huge stain all day? Well, my version of that involves throwing out a white shirt I was wearing because body fluid got all over it. The body fluid wasn’t mine. Yeah.

But, just like you, I have massive amounts of paperwork I have to do. After all, a job is a job is a job.

Hopefully you won’t have to attend too many funerals, but if you live long enough you’re almost certainly going to have face the music at least a few times. They’re rarely pleasant (except jazz funerals. Everyone should experience a jazz funeral — that’s how I want to go out.) but they’re a reality, and when you do have to go to one, there are a few things to keep in mind that will make your experience — and the funeral director’s — much better.

There’s no official dress code, but don’t push it

I understand that this nation is experiencing a full “dressing-down revolution,” but let’s evaluate. If you’re a male family member, a suit is almost a must. If you can’t wrangle a suit, slacks and a button-down are acceptable, but try not to dip below that. Polos are borderline and T-shirts are damn near disrespectful. I saw a guy walk into my place wearing an Angry Birds shirt, jorts, and Crocs. You’re going to a funeral, not a taping of Monday Night Raw. Put some effort in.

As for the ladies, just look nice. You have a few more options than the guys, but make sure it’s nothing too crazy, and NO JEANS. I swear I once had a lady walk in for a wake wearing a bikini and a cover-up that didn’t quite “cover up.” I assure you that anything you can wear to the beach isn’t appropriate to wear while standing in front of a casket. You don’t have to be a MENSA member to understand this.

Funerals are not the time or place for a buffet

In New York, we can’t have food in the funeral home. This isn’t just our rule, it’s also the New York State Board of Health’s rule. Food attracts bugs, vermin, and other unwelcome guests into funeral homes. We know this. The Board of Health knows this. The sign in our lobby is there so you know it.

This doesn’t mean “all food except the three dozen donuts and a box of coffee.” This isn’t Golden Corral. You should be able to handle going two or three hours without food — it’s why most wake times are split up, so you have a couple of hours for dinner in between.

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One day somebody tried to bring in four pizzas and a case of beer for a wake. I was tempted to let him in, because who doesn’t love pizza, but I had to stop him at the door. This led to my being cursed out in vile, creative fashion, but hey, those are the rules. And really you should know that pizza is only acceptable at a wake if it’s for one of the Ninja Turtles or Kevin from Home Alone.

Drinking, death, (and sex) go hand in hand, but know your limits

A lot of people need a nip or two to get through a funeral. It’s stressful, and sure, you might want to take the edge off. DO NOT DRINK TOO MUCH. Too many times I’ve witnessed people puking all over the bathrooms here. Years from now, you never want to hear the question, “Hey, remember at grandma’s funeral when you did seven tequila shots back to back at dinner and vomited into a potted plant?”

Things can get even dicier when sex is added to alcohol — death and sex have long been connected in art and literature, a truth I see lived out more frequently than you might expect. I had a funeral for an older woman who had a granddaughter about my age. The granddaughter was involved in the funeral arrangements, and during the afternoon visitation, everything went smoothly. As she was leaving, she invited me to a bar to join her for drinks between sessions, but seeing as I had to work the night session of the wake, I declined.

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Well, when she got back from the bar she was bombed. Staggering all over the place, knocking a plant down, slurring her words. It was bad. She mentioned something about needing to talk to me, but I blew her off, chalking it up to buzzed babble. When she disappeared for a while and the ruckus seemed to die down, I decided to slip off to my office to decompress.

Once I turned the light on, I saw that she was in there, sleeping. I woke her up (more or less to make sure she wouldn’t vomit in there), and she immediately clung on to my chest, talking about “wanting to thank me.” That hand on my chest surely made its way down to my crotch, and she was not letting go, despite my protests.

At that point, I knew I had to get her out of my office and off of my crotch, since no good could come out of this situation. I started to steer her out of the office by her shoulders while she began kissing my neck, making it out into the hallway. Luckily, one of her cousins saw me and pulled her away, and someone drove her home after that. At her grandmother’s service the next morning she couldn’t look me in the eye. Only after the casket was lowered did she come up to me and apologize.

Funerals are times for mourning, not violent grudge matches

Emotions run high enough during funerals, so don’t make things worse by continuing old grudges or starting new ones. One bad exchange can set off a powder keg.

I witnessed two brothers squabble over money from the minute they came in to make arrangements. The morning of the funeral it reached its breaking point. What started as a loud argument in front of the casket progressed to a screaming match in the lobby.

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By the time I got to them I couldn’t believe what I was witnessing — each brother was holding an unplugged floor lamp like a lightsaber, circling each other. It took me a second to process everything, but when I finally spoke up to tell them how ridiculous the situation was, one them smacked the other over the back with the lamp (I do have to respect the opportunistic nature of that fella), which led to a quick skirmish on the floor. It broke up pretty quickly, but it was neither the time nor the place for it — the correct time and place would’ve been the ECW Arena in 1997 — and everybody left feeling pretty embarrassed.

If you’re not hammered, violent, or blatantly rule-breaking, most other requests are OK

On the other side of the coin, if you have a special request for your loved one, don’t be scared to speak up. One person wanted me to play Nirvana on the way to the cemetery because it was the deceased’s favorite band. “Oh, and one more thing — CRANK IT.” You bet your ass I did it. There wasn’t a cooler hearse in the world that day. It got some strange looks from the people we passed on the street, but whatever.

I’ve received requests to wear a Mets tie while doing a funeral, to pass someone’s favorite bar on the way to the cemetery, to lead an entire collection of people attending a funeral in singing The Golden Girls’ theme, pretty much anything you can imagine. Have I rolled my eyes at some of the requests? Absolutely. But you know what? When you see how much it means to the family, it makes it all worth it.

People don’t really want to talk about death or funerals, and yeah, funeral directing is a strange job. Having your mortality thrust in your face every day you go into work gives you a pretty unique outlook on life. I don’t particularly mind the job as a whole — I wish it were more 9-5, but hey, I get to help people, and that feels pretty good.

Complete Article HERE!

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How to Die Peacefully, Part 2 Making Arrangements

Look for Part 1 of this series HERE!

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1. Prepare an advance directive.

An advance directive is basically just a written document or a series of documents explaining what you want to have happen during your end-of-life care. It may outline a variety of topics, including your wishes for your care, should you become incapacitated, as well as naming proxies and a power of attorney.

  • These documents will need to be drawn up by attorneys and notarized. These aren’t likely things that you’ll want to have to spend a lot of time dealing with yourself, so it’s common to delegate these tasks to others.

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2. Prepare for the distribution of your estate.

There’s a lot of comfort in knowing that you’ve taken care of everything ahead of time and haven’t left big or stressful decisions to be made after you’re gone. If you’re up to it, it’s important to have legal documents drawn up..

  • A living will describes the type of healthcare you hope to receive and whether or not you’d like to remain on life support, and under what circumstances, should you become incapacitated and unable to make your own decisions. Living wills can be prepared by attorneys and should be prepared ahead of time.
  • Last wills are designed to designate property to beneficiaries, assign guardians for minor children, and elucidate any last wishes. This is somewhat different than a living trust, which will transfer property immediately, as opposed to after your death.[3]

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3. Consider naming a health-care proxy.

In some cases, it may be good for you to delegate these responsibilities instead to a proxy, in the event that you’re unwilling or incapable of making these decisions for yourself. This is often an adult-aged child or spouse, who will be tasked with making choices regarding your health care as things progress.

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4. Consider naming a health care power of attorney, if necessary.

In some cases, it may be difficult to choose or assign proxy responsibilities to a private party, and you may wish instead to assign them to an attorney. This is extremely common and can be a relatively stress-free way of turning over technical responsibilities to someone else, allowing you to deal with your own comfort and emotional responsibilities.[4]

  • A health care power of attorney is different than a general power of attorney, which provides for financial assistance after death. While both of these may be appropriate options, it’s important to distinguish between them.[5]

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5. Make arrangements for your remains.

Though it may be slightly unnerving, it’s important to decide what you want to happen to your body after you die. There are many options and considerations, depending on your culture and religious background.

  • If you want a funeral, or religious ritual to be performed after your death, you may want to arrange the ceremony yourself, or delegate the responsibility to a loved one. Make the arrangements in terms of churches, funeral homes, if it helps you to find closure.
  • If you want to be buried, decide where you want to be buried and which family members you want to be buried near, if you haven’t made those decisions already. Secure a burial plot by making a down payment, and make arrangements with a funeral home in your area, if necessary.
  • If you’d like your body to be donated, make sure your donor status is up to date and accurate, according to your wishes. Contact the university or foundation to which you want your remains donated and make the necessary arrangements.

Tomorrow, Part 3 — Making the Most of Your Last Days

Complete Article HERE!

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How to prepare for a good death

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Wise words and solid advice from BJ Miller, who thinks deeply about the end of life as head of the Zen Hospice Project.

Death is an uncomfortable topic. Although we’re well-acquainted with platitudes that remind us to seize the moment and live each day like it’s our last, few of us devote real time to envisioning the end of our lives — or the lives of those we love. In contrast, this is a focal point for BJ Miller, palliative care physician and executive director of the Zen Hospice Project, a San Francisco-based nonprofit that’s focused on improving our experience of death. His TED Talk, What really matters at the end of life, prompted such an outpouring of response that we hosted a Q&A on Facebook to hold a larger conversation about end-of-life care, dying with dignity and providing support for patients and families. Here are just some of the questions — and Miller’s answers.

Based on your experiences, what do you find that most people really want at the end of life? – Emilie S.
In general, people yearn for comfort, for their loved ones to be well cared for, to be unburdened and unburdening, to find some sense of closure and peace. But those are generalities and I would encourage all of us to remember that dying people are living and to treat them accordingly. There is so much room for personal preference.

What are good ways to talk to kids about death? – Michelle Q.
It’s important to remember that kids are not just miniature adults. This big topic, like others, needs to be couched in their developmental stage. In general, it’s helpful to avoid euphemisms or overly indirect language. Kids are generally much straighter shooters than we adults. There is a field called Child Life Services that has a lot to say about this subject and can be a great resource.

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People often say they don’t like hospitals; that mental block keeps them from spending time with someone they care about at the moment they need it most. What advice do you have for people who have a loved one in a hospital? How can each of us make that space kinder and better for the senses? – Kate T.
Little things go a long way. Bringing in photographs, familiar objects, flowers are, in my book, always wonderful. Of course, you can always bring in fresh baked cookies — even if your loved one can’t eat, engaging the senses can be potent. Those are some ideas around the external space. Of course, it’s always helpful to cultivate internal spaciousness by being a source of calm.

Death is a hard subject to talk about. How do we talk about this with our families so we can plan? – Danny K.
Several US-based organizations come to mind, including the Conversation Project and the Coalition for Compassionate Care of California. Another tool that people seem to love is the card game, My Gift of Grace. At Zen Hospice Project we also proudly host “death cafes” as a social engagement, and also offer a mindful caregiving program for anyone involved in facing the challenge at end of life or anyone interested in exploring more about this topic.

How does a non-clinical person learn how to care for others at the end of life? It seems like many of us will be in that position. – Don D.
This is exactly why we created the Mindful Caregiving education program at Zen Hospice Project. Estimates are that nearly one third of American adults will either need to receive or provide care to a loved one. We realize there are very few resources to support family caregivers and “informal caregivers” and that the work can be grueling. Zen Hospice Project’s educational curriculum is uniquely designed to enhance and support the wellbeing of both the patient and the caregiver. The program’s balance of social, medical and spiritual practices enables formal and informal caregivers, doctors, nurses and administrators to experience compassion and resiliency at the bedside while reducing burnout and enhancing care.

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Do you have any advice for caregivers about how they can take care of their own mental health? – Ella C.
We know from studies what works. There are two major themes for self care: one is some reflective practice, whether yoga or meditation or walking in the woods; the other is some sharing, talking, processing with people you know and trust. Especially with people who do similar work. Beyond those two major points, I would add to be good to yourself and don’t lose yourself in the role.

What do you think about end of life dialogue being considered as aphysician-reimbursed service in the United States? Given your experience, what do you think are the most important pieces of the conversation? How could physicians be better equipped to have this conversation? How could mindfulness training inform this service? – Liz M.
I’m very excited about this new legislation, both practically and symbolically. The key points are to have an open and ongoing conversation with your physician as well as your family or proxies. In fact, I think the single most important thing you can do is to name your proxy, because the situation needs to be read in real time. Remember this is not a single conversation but one that requires updates over time. Training clinicians to have this conversation is another matter and requires time: I recommend reading Atul Gawande’s book, Being Mortal, as a great resource. Insofar as mindfulness allows us to be more present in difficult situations, it can help set the stage for a more fruitful conversation.

Do palliative health centres offer psychological or other support for families after a loved one has passed? – Kasia S.
All certified hospice agencies are required to offer bereavement services to their communities. Admittedly, these services are poorly funded and generally underdeveloped. There is so much more work to be done helping families process what’s just happened and also to protect the new tenderness they may feel as they head back into the world. On an individual basis, many psychotherapists specialize in grief counseling and can be wonderful resources. On our way to developing more formal programs, we happily receive family members long after the death of their loved ones to revisit the house and the Zen Hospice community.

Can you offer resources for education material, guides for conversations and so on in languages other than English? – Julien G.
A great place to start would be to reach out to your local hospice or palliative care organization. You may also check with the National Hospice and Palliative Care Organization, the Center to Advance Palliative Care or the American Academy of Hospice and Palliative Medicine. You are pointing to a real need for cross-cultural understanding on the subject.

 Complete Article HERE!

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Allina program offers life lessons for end-of-life patients

The LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.

life lessons

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Bob DeMarce made a living as a funeral director, but he didn’t think much about his own mortality until he developed cancer. He soon learned it took more than being sick to prepare him for death.

DeMarce became one of hundreds of Minnesotans enrolled in a research program that prepares patients and families for the end of life. Conducted by Allina Health, the LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.

DeMarce already had plenty of doctors, care coordinators and rehab specialists to attend to his medical needs. LifeCourse gave him a “care guide” — a nonmedical counselor — who met with him and his family to help them set goals and provide support.

“Most people would hesitate to talk about this sort of thing,” said the 75-year-old DeMarce, who has had two bouts of lung cancer in addition to colon cancer. “With the different scares I had with cancer … We did want to get things straightened out.”

One goal of the program is to increase the number of patients with advance care directives, which research has shown can reduce the amount of unnecessary and often unwanted care at the end of life.

And the results were dramatic: Patients in the LifeCourse intervention group had fewer hospital inpatient days, fewer emergency room visits and less intensive care, compared with a control group that was tracked but did not work with care guides. About 85 percent completed a living will, compared with 30 percent in the control group.

But the program also aims to improve the quality of life at a time when chronically ill patients and their families often feel overwhelmed.

“The model we chose was one that would be very personal,” said Dr. Eric Anderson, a palliative care physician at Allina’s United Hospital and one of the LifeCourse leaders. “There is an intimate connection between talking about what matters most and having effective advanced directives.”life-lessons

In some ways, the program turns the patient’s focus away from the end of life to the life that can be lived.

“People want to have meaning in their lives, that is more important than anything else,” said Anderson.

“The lived experience for these patients and for their families is simply better. In a number of ways they feel more holistically supported, less anxious and they are using services in a more rational and effective way.”

Minneapolis-based Allina is so encouraged by the program that it plans to develop it beyond the research phase and make it available to patients at eight Allina clinics by the end of this year. It is also talking with other organizations that might adopt the LifeCourse model.

“We’ve got such a large number of people who will be over the age of 65 who will face serious illness,” said Heather Britt, Allina’s director of applied research, who also worked on the project. “Systems like ours have to figure out what to do differently.”

Setting a course

LifeCourse began in 2012, targeting patients with heart failure, advanced cancers and dementia using Allina’s electronic medical record.

“We figured out who was sick enough with those diagnoses, and that took a fair amount of tweaking,” Anderson said.

Eventually, 450 patients were enrolled in the intervention group and about an equal number in a control group.

Care guides meet with patients and their families monthly.
“I am helping them identify what their goals would be and what resources that they might need,” said Judi Blomberg, an Allina care guide since 2013. A lawyer by training, Blomberg was drawn to a health care job because she wanted to help people dealing with crises and trauma.

“Feeling overwhelmed is something that happens when we hit those crisis points,” said Blomberg. “One of my jobs is to help people anticipate what is to come.”

Using a set of questionnaires and assessment tools, care guides help patients set a course to achieve what matters to them.

For some patients, it could be medical goals such as staying out of the nursing home, controlling blood sugar, walking without a cane or losing weight. But many patients also set goals outside the medical realm: doing volunteer work, spending more time with relatives or putting together photo albums.

Toes in the ocean

Bob DeMarce and his wife, Marilyn, who were among Blomberg’s first clients, decided their initial goal was to develop a living will.

“One thing that we were bringing to them was a framework where they can talk about difficult things together that had been hard for them to talk with each other about,” Blomberg said.

“It felt very natural,” said Marilyn DeMarce. “They made it not hard to sit down and have a conversation.”

“She kept us on point and made sure we got it done,” said Bob DeMarce, who does not want any extraordinary measures to prolong his life.

In addition to completing a living will, the DeMarces resumed traveling, a favorite pastime, last November with a trip to Palm Springs, Calif., including a side trip so Bob could stand in the ocean.

“That was big on my bucket list,” he said.

Although Bob DeMarce is now cancer-free, he did fall and break his femur about two years ago. The DeMarces were able to rely on their care guide for help.

“It really provides extra support. When you are in crisis you need as much help as you can [get],” said Marilyn DeMarce. “When you are living with this type of illness you know that at any moment your life could just change.”

“The interest they have shown in my health for whatever reason has been beneficial to me,” Bob DeMarce said. “It prepares you to live with being sick but it also helps you to get ready to die.”

Complete Article HERE!

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‘The Good Death’: Hard to find, and religion’s role may be to blame

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There is no such thing as a “good death.” There is only a “good enough death.”

So writes Ann Neumann in “The Good Death: An Exploration of Dying in America.” A visiting scholar at the Center for Religion and Media at New York University and a hospice volunteer, Neumann takes a close-up look at end-of-life issues and how they are both helped and hindered by faith.

"The Good Death" by Ann Neumann.
“The Good Death” by Ann Neumann. Cover photo courtesy of Beacon Press

“Religion is most prevalent around the deathbed in our country,” Neumann, 47, said in a phone interview from her home in Brooklyn, N.Y. “That is where it is resoundingly proven that we are not a secular nation.”

“The laws, medical practices and corporate regulations that surround death and dying continue to be strongly influenced by religion, whether it is in the delivery of health care through Catholic hospitals, whether it is in the rituals that medical practice is infused with, or whether it is simply in the language that we find acceptable around the dying.”

If “The Good Death” is anything, it is a call for people to examine their own wishes around end-of-life issues and decide what role religion — either theirs or that of their caregivers — will play. Religion, she holds, influences our ideas of quality of life and how far we are willing to go to preserve it.

Neumann has spent time around the dying. Her first up-close experience as a caregiver was with her father’s difficult, drawn-out death from cancer that left her worn-out and overwrought.

In the aftermath, unmoored by her own grief and seeking a way to cope with the death she knew would someday come for her and her loved ones, she decided in 2007 to become a hospice volunteer. Her descriptions of her visits with her patients are among the most moving in the book.

In between she weaves in the history of death in America, from the front parlor to the back room of the nursing home. She chronicles the harrowing right-to-die cases of Karen Ann Quinlan, Nancy Cruzan, Terri Schiavo and Jahi McMath, who remains in a coma in New Jersey, the only state that does not consider her legally brain dead, Bible verses hanging over her bed.

Newmann, reared a Mennonite and now a Catholic, looks at how quality of life is often sacrificed for sanctity of life, often for religious reasons, by health care providers, families and religious leaders.

“We must examine the inequality and the discrimination that the church has built into its position on health care,” she said. “The Catholic Church is so good at managing hospitals, at addressing patient care that we cannot say it is bad on the whole and yet the discrimination against women, the lack of autonomy provided to elders or to individuals like to Terry Schiavo — these families that are put in these difficult positions should be supported by their church. They should be able to make their own decisions.”

Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica. This is her first book.
Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica. This is her first book.

But what about hope? In the book, Neumann echoes the writing of Adrienne Martin, a professor at the University of Pennsylvania, who writes that hope is not always a good thing. It can lead to pain and suffering, both physical and emotional, and result in stretching out an illness in the hope for an unlikely positive outcome.

“It was an area of research that fascinated me because it did question the hands-down understanding we have that hope is always good,” Neumann said. “Hope can be sustaining. It can get us out of bed. But it can also result in the very painful treatment of patients and lead to denial.”

What’s a country with a rapidly aging population to do? The U.S. Census Bureau predicts that by 2050, one in five Americans will be 65 or older and have diverse ideas about end-of-life issues. A Pew Forum survey in 2013 found two-thirds of Americans believe there are some situations in which patients should have a right to end their own lives, while 31 percent say doctors should do everything they can to prolong life.

Start conversations with your loved ones, make your end-of-life wishes clear and know your rights, Neumann said.

“A good death is whatever a patient wants,” Neumann said. “It is not up to me, to their legislators, to their priests, to their families. That is true informed consent. A good enough death is as close as we can get because humans are not perfect. We can get so much closer, but we will never have a perfect death.”

Complete Article HERE!

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At my father’s bedside, I learned what death looks like

NHS end-of-life and palliative care must focus more on the dying person’s needs and wishes – but for that we need to have proper conversations

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Jon Henley with his father, mother and son in 2003
Jon Henley with his father, mother and son in 2003

My father spent 10 days dying.

He was 84 and he had lost his wife – my mother, whom he adored, and without whom he felt life was a lot less worth living – three years earlier. He died of old age, and it was entirely natural.

The process, though, did not feel that way at all, at least not to me. Dad had been bedridden for months and was in a nursing home. He stopped eating one day, then started slipping in and out of consciousness. Soon he stopped drinking.

For 10 days my sister and I sat by his bedside, holding his hand, moistening his lips. Slowly his breathing changed, became more ragged. During the last few days, the tips of his fingers turned blue. His skin smelled different. His breath gradually became a rasp, then a rattle.

It sounded awful. We were sure he was in pain. The doctor reassured us he wasn’t; this was a human body dying naturally, shutting down, one bit at a time. We had not, of course, talked about any of this with Dad beforehand; we had no plans for this, no idea of what he might have wanted. It would have been a very difficult conversation.

The doctor said he could give him something that would make him at least sound better, but it would really be more for us than for my father. “My job,” the doctor said, “is about prolonging people’s lives. Anything I give to your father now would simply be prolonging his death.”

So we waited. When it finally came, death was quite sudden, and absolutely unmistakable. But those 10 days were hard.

Death is foreign to us now; most of us do not know what it looks, sounds and smells like. We certainly don’t like talking about it. In the early years of the 20th century, says Simon Chapman, director of policy and external affairs at the National Council for Palliative Care, 85% of people still died in their home, with their family.

By the early years of this century, fewer than 20% did. A big majority, 60%, died in hospital; 20% in care homes, like my father; 6% in hospices, like my mother. “Death became medicalised; a whole lot of taboos grew up around it,” Chapman says. “We’re trying now to break them down.”

There has been no shortage of reports on the question. From the government’sEnd of Life Care Strategy of 2008 through Julia Neuberger’s 2013 review of the widely criticised Liverpool Care Pathway to One Chance to Get it Right, published in 2014, and last year’s What’s Important to Me [pdf] – the picture is, gradually, beginning to change.

The reports all, in fact, conclude pretty much the same thing: the need for end-of-life care that is coordinated among all the services, focused on the dying person’s needs and wishes, and delivered by competent, specially trained staff in (where possible) the place chosen by the patient – which for most people is, generally, home.

“It’s not just about the place, though that’s important and things are moving,” says Chapman: the number of people dying in hospital has now dropped below 50%.
“The quality of individual care has to be right, every time, because we only have one chance. It’s about recognising that every patient and situation is different; that communication is crucial; that both the patient and their family have to be involved. It can’t become a box-ticking exercise.”

Dying, death and bereavement need to be seen not as purely medical events, Chapman says: “It’s a truism, obviously, but the one certainty in life is that we’ll die. Everything else about our death, though, is uncertain. So we have to identify what’s important to people, and make sure it happens. Have proper conversations, and make proper plans.”

All this, he recognises, will require “a shift of resources, into the community” – and funding. Key will be the government’s response to What’s Important to Me, published last February by a seven-charity coalition and outlining exactly what was needed to provide full national choice in end-of-life care by 2020. It came with a price tag of £130m; the government is expected to respond before summer.

In the meantime, though, a lot of people – about half the roughly 480,000 who die in Britain each year – still die in hospital. And as an organisation that has long focused on curing patients, the NHS does not always have a framework for caring for the dying, Chapman says.

But in NHS hospitals too, much is changing. There has been a specialist palliative care service – as distinct from end-of-life care, which is in a sense “everyone’s business”, involving GPs, district nurses and other primary care services – at Southampton general hospital and its NHS-run hospice, Countess Mountbatten House, since 1995, says Carol Davis, lead consultant in palliative medicine and clinical end-of-life care lead.

People die in hospital essentially in five wards: emergency, respiratory, cancer, care of elderly people and intensive care, she says: “Our job is about alleviating patients’ suffering, while enabling patients and their families to make the right choices for them – working out what’s really important.”

Palliative care entails not just controlling symptoms, but looking after patients and their families and, often, difficult decisions: how likely is this patient get better? Is another operation appropriate? What would the patient want to happen now (assuming they can’t express themselves)? Has there been any kind of end-of-life planning?

Of course many patients in acute hospital care will not be able to go home to die, and some will not want to, Davis says: “Some simply can’t be cared for at home. If you need two care workers 24/7, it’s going to be hard. Others have been ill for so long, or in and out of hospital so often, they feel hospital is almost their second home. So yes, choice is good – but informed choice. The care has to be feasible.”

In 2014, the report One Chance to Get it Right [pdf] identified five priorities in end-of-life care: recognise, communicate, involve, support, and plan and do. (“Which could pretty much,” says Davis, “serve as a blueprint for all healthcare.”) The first – recognise, or diagnose – is rarely easy. How does a doctor know when a patient is starting to die?

“There are physical signs, of course,” says Davis. “Once the patient can’t move their limbs, or can no longer swallow.” But, she says, “we have patients who look well but are very ill, and others who look sick but are not. In frail elderly people – or frail young people – it can be hard to predict. Likewise, in patients with conditions like congenital heart disease, where something could happen almost at any moment.”

Quite often, Davis and her team face real doubts. “Right now,” she says, “I have a patient in intensive care, really very ill. They probably won’t pull through, but they might. I have another doing well, making excellent progress – but they’ve been in hospital for three months now. They’re very, very weak, and any sudden infection … You just can’t predict.”

Which is why communication, and planning, and involving the family – all those difficult and painful conversations that we naturally shy away from – are so very important.

It could well be, for example, that my father would actually have wanted his death to be prolonged: he certainly clung on to life with a tenacity that startled my sister and me. We will never know, though, because we didn’t talk about any of it.

“It is our responsibility – all of our responsibility – to find the person behind the patient in the bed,” Davis says. “One way or another, we have to have those conversations.”

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