Celebrating a life well-lived — one year later

“The goal is not a good death. The goal is a good life — all the way to the very end.”

— Atul Gawande, M.D., surgeon, writer and public health leader

By rclark

One year ago on this date, July 11, 2019, my wife, Norma, was freed from the prison of Alzheimer’s disease. So exactly one year later it is appropriate to celebrate Norma Houghton’s life and share with my readers personal reflections on my recovery.

You who have been with me all the way from diagnosis in 2010 to last summers’ final breath know the documented story of a lady who gave an extraordinary gift to sacrifice her privacy to help others. The sadness in over 10 years of seeing her drift away was softened by the concern of many readers, as well as numerous caregivers.

My restoration and renewal following our 57 years of marriage has been facilitated in part by periodic messages this past year from her hospice caregivers from Compassus. A healing journey of recurring memories was predicted by their periodic communication.

Norma’s good works have been recognized with the Norma A. Houghton Staff Award in the Birthing Center of Monadnock Community Hospital and an annual scholarship for a graduating student from one of our three local high schools choosing higher education in nursing.

As past co-chair of the Western New Hampshire Walk to End Alzheimer’s, I have been given the satisfying task of using my wife’s story as a monthly “mission moment” to cheer on the current walk committee through the challenges of planning a major event during the pandemic.

So her legacy lives on and, though grief has come to my life, spiritual growth and a new life have also emerged as predicted and aided by Compassus. I can now see that hospice is not about dying but helping caregivers and patients live life to the fullest.

When our time on Earth comes near a close, the choice of hospice provides a better quality of life than if aggressive end-of-life medical care were applied. Dr. Gawande’s classic treatise, “Being Mortal,” about “medicine and what matters in the end,” is on point.

You may remember an early column about full body donation for medical education. I expect next week to travel to Boston University Medical School to bring Norma’s ashes back to Jaffrey. Plans are being laid at the United Church to develop a memorial garden as a final resting place for beloved members of the church.

If you want to find out more about hospice services, visit the hospice and palliative care organization (www.nhpco.org). It is not true that hospice is only for the final days or hours of life. Hospice is about helping patients and their families have the best possible quality of life as they can when life expectancy is limited.

Usually a patient’s doctor and the hospice medical director work together to offer experience with hospice criteria, guidelines and clinical judgements. Hospice Medicare coverage includes nurses, other caregivers, medicines, supplies and equipment, with little or no cost to patients, families or caregivers.

Clearly for me hospice care provided even more than medical, emotional, social and spiritual support. I find myself surrounded with family and friends who share my loving memories of Norma and continue to offer peace and support as I come to this special date.

Compassus gave me positive relief and strength during a time of extended grief, allowing me to create appropriate remembrances and lasting reminders of a life well lived. Since they suggested a celebration on the anniversary of my loved one’s death, isn’t it a joy that my July column is published as a tribute on this very date!

“Enjoy life. Have fun. Be kind. Have worth. Have friends. Be honest.

“Laugh. Die with dignity. Make the most of it. It’s all we’ve got!”

— Ricky Gervais

Complete Article HERE!

BIPOC in Death Care

The voices of Black, Indigenous, and People of Color (BIPOC) need to be amplified so we are going to use our newsletter and social media platforms to aid in their sharing. Here are a few resources for us to explore racism, privilege, and bias in death care:

Sayin It Louder: A Conversation About “A Good Death” in a Racist Society.

A conversation among death care professionals Alua Arthur of Going with Grace, Lashanna Williams of A Sacred Passing, Joél Simone Anthony of The Grave Woman, Alicia Forneret, Oceana Sawyer, and Naomi Edmondson.

 

Watch the recording of their discussion by clicking here.

5 Crucial Things A Grieving Partner Needs You To Know

by Susan Johnston

We all process grief differently.

When my dad died, it was hard on me, of course, but also on my boyfriend.

The call came just a few weeks shy of our one-year anniversary. Suddenly, he found himself sitting next to me in the front row of the church and meeting my extended family.

He handled it with sensitivity and maturity, and the experience has brought us even closer.

I’ve had boyfriends in the past who weren’t the consoling kind (“I’ve never heard of Shy-Drager Syndrome — how bad could that be? Are you sure your dad has that?”), so I considered myself lucky to have a boyfriend who could watch me break down in tears and hold me sympathetically without making inappropriate comments or breaking down himself.

In a cruel twist of fate, I got a taste of the other side when a doctor diagnosed his mother with cancer less than a year after I lost my dad.

Being the shoulder is a lot harder than he made it look. There’s not much you can say that will make things better, though you’re tempted to try.

Both of us experienced anticipatory grief (me knowing my dad would never dance at my wedding or hold his grandchildren, him wondering when and how his mother might go).

But we expressed these sentiments differently. I needed to talk or cry at inopportune moments. He approached it from a more practical, scientific perspective.

According to Roberta Temes, a psychotherapist who specializes in grief counseling and the author of Solace: Finding Your way Through Grief and Learning to Live Again, this gender difference is pretty typical.

“Women will talk to girlfriends more,” Temes says. “The community of women is accustomed to talking. The community of men is accustomed to getting on with it.”

So, what do you say to your significant other when they lose (or know they could lose) a close friend or relative? And how do you help them regain their footing after the passing?

Everyone experiences grief differently, but here’s how to support your partner through grief by keeping a few things in mind.

1. Sometimes silence really is golden.

According to Temes, one of the worst things you can say is, “I know just how you feel.” As Temes explains, “Each heartache and heartbreak is unique; you really don’t know any but your own.”

Even if you’ve lost someone you love, you probably don’t know exactly what the loss means to them or how they will process it, so don’t assume that you do.

When in doubt, simply offering a hug and a willing ear can show that you’re there for the person. You don’t always have to say something comforting. 

2. Sometimes we need to talk, even if we’re just repeating ourselves.

“If it’s the beginning of mourning, they need to be left alone,” says Temes. “If a few weeks or months have passed, then they need to talk about the relationship. It is important for them to talk, often repeating the same stories. The more they speak of the moment of death, the sooner it becomes a reality to them.”

Temes suggests asking questions like these to open up the conversation: “How are you doing — is it difficult to sleep? Are you able to get back to work yet? Some people find it difficult to eat when they are mourning. Would you like to come over for dinner one night next week?”

3. Even if you didn’t know the person who died, we need you there.

Whether your partner just lost someone they care about or anticipates losing them, they need your support.

If you’re with someone whose parent is dying, and they ask you to go with them and visit that person, don’t say “no,” “let me think about it,” or “that’s too much of a commitment.” You’re there for your partner, not their relative.

If you don’t care about them enough to say yes, then a serious relationship isn’t for you.

My boyfriend felt a little out-of-place sitting with my immediate family at the funeral when he’d only met my dad twice. But my brother appreciated having him there so he could focus on comforting my mother, and I appreciated him making the effort, too.

4. Healing rituals can help.

“Rituals are terrific,” Temes says. “All religions have rituals. If you’re not religious, it’s still a great idea to establish a ritual, which can range from setting aside a particular time to go through a photo album to lighting a candle and saying your memories.”

5. Grief doesn’t follow deadlines.

“It is a long process,” according to Temes. “Those who are grieving will get back to themselves when they are ready, not when you invite them to a party or demand they pull themselves together.”

A month after my dad died, I thought I was feeling like myself again.

Then I saw a family huddled around their luggage at an airport, and it reminded me of all those vacations my dad loved to plan and how we’d never get to travel with him again. Or, I’d see an older man in a wheelchair and get a flashback to my dad’s last few months.

Grief can come in waves, but as time passes, mine has become more muted and less frequent.

While everyone’s healing process is different, Temes says that if a month or two as passed and your significant other cannot eat, sleep or function at work, or if they become obsessed with the deceased person, it’s time to get concerned.

She suggests you, “tell your partner you are worried about them and so you made an appointment with someone who knows more about bereavement than either of you.”

Complete Article HERE!

When ‘content’ means choosing the day you die

Lynn Kennedy Ottawa in apartment on Wednesday Feb 5, 2020.

By Kelly Egan

One day last week, Lynn Kennedy finally got the medical news that would end her chronic pain and stop the many-sided suffering she has endured for nearly 10 years.

Doctors agreed to help her die.

Kennedy, 58, had been trying for months to have a medically assisted death and went public with her wishes in February to draw attention to a major barrier in Canada’s regulations.

Applicants could only be approved if their death was “reasonably foreseeable” and, at the time, hers was not, leaving her to cope with years, possibly decades, of declining physical and mental health.

“I’m not me anymore,” was the devastating way she expressed her station in life.

Kennedy, a former administrator with the Ottawa Police Services Board, had been battling a condition called transverse myelitis, a disorder caused by inflammation of the spinal cord and one that can mimic the symptoms of multiple sclerosis.Over a decade, her mobility was gradually reduced to the point that she went from using a cane to an electric wheelchair. She was unable to get out of bed or get to the washroom and, in 2019, moved to a retirement home where she needed support for daily living.

A severe gastro-intestinal blockage landed her in hospital in May. An attempt to give her liquid medicine via a “nasty and uncomfortable” feeding tube earlier this month did not go well, as she has a strong gag reflex.

“That lasted about a day,” she said in an interview from her fifth-floor bed at The Ottawa Hospital’s Civic campus. “I just started screaming, ‘I’m done, I’m done, get it out, I’m done.’”

Because the consensus from two doctors was that the upper-tract blockage — left untreated — would bring about her death in fairly short order, her MAiD, or medically assisted death application, was approved.

Kennedy died in hospital Tuesday, but not before reinforcing her message about the program’s shortcomings.

“I shouldn’t have to wait for someone that I don’t know, didn’t know, and never met, to decide my fate,” she said in a final interview.

“Let it be the patient’s choice. Don’t let a stranger decide.”

Though she worries for her daughter Courtney, 37, and two grandchildren, Kennedy said her strongest reaction to being approved was relief.

“When I heard I was accepted, it was a big sigh and I thanked (the doctor).”

*

Two hours after, Courtney called with the news, pulled over by the side of the road. Her mother went peacefully, in a matter of minutes, before the clock struck noon.

“I’m relieved for her. We had a great last couple of days together and even better final moments.” Lynn’s older sister Gail was also present. That morning, medical staff came by, saying they had learned a good deal about her rare condition, MAiD and the force of one patient’s courage.

The night before, Kennedy received some welcome news. A genetic researcher in the United States said he would be anxious to have spinal cord samples from her, to better study transverse myelitis and help develop treatment options.

It was the first time, Courtney was told, that such a sample would be received by Harvard University’s medical school.“It was a really, really great thing for mom to hear. She always wanted to help somebody or help with something when she went.”Her eyes were also donated. Her mother’s determination to control her own outcome never wavered, Courtney added.

“She absolutely, 100 per cent had no regrets,” she said. “We both said the most perfect things to each other right at the end.”

Among the last things her mother said was “thank you.”

*

Kennedy spoke of the long stretches she has spent in hospital during the last several years, each stay leaving her a little more diminished, the 30 pills she took daily, the loss of independence, the reliance on a call button for basic needs.

“Every time I go in the hospital, I lose something. Every time, and that goes back four years,” she said.After first applying in December, she met all of the MAiD requirements except for the “foreseeable” clause and initially even had a date picked out — Feb. 8 — when her request was denied.

Lynn Kennedy in her apartment in Ottawa Wednesday Feb 5, 2020.

Kennedy went public with her concerns in a story by this newspaper at a time when the federal government was — and still is — proposing changes to the Criminal Code provisions that permit medically assisted death in this country.The revisions were needed after a Quebec Superior Court ruled the “reasonably foreseeable” requirement was a violation of a person’s constitutional rights. The court ordered Parliament to amend the law by July 11.

A spokesman for the Justice department said the COVID-19 pandemic has made it impossible for legislators to meet the deadline and an extension to Dec. 18 has been sought in a court motion. More than 6,700 Canadians have had a medically assisted death since the law came into effect in 2016.Among many changes, the “reasonably foreseeable” section of the law is being rewritten to give patients more control of the timing. The issue of “advanced consent” is also being addressed, in cases where individuals lose mental capacity in the course of their illness.Kennedy, a single mother who admitted to feelings of “cold heartedness” in this seven-month process, said she was not afraid of dying.

“No. Nobody knows where we’re going.”She spent her final days in the company of her daughter and sister and, even in her final hours, never lost her sense of humour. (The food at the General campus, she said, was “gross,” and of her iron-resolve to have an assisted death, she said: “I made two doctors cry today.” No mention, meanwhile, of the grizzled scribbler, wiping something from his eye.)“I’ve been isolating myself for the last year and a half,” she said of tidying up loose ends. “I’m quite content.”We do not doubt her on that point. She had, after all, the final say.

Complete Article HERE!

Goodbye, Grandpa

– An expert guide to talking to kids about death during Covid

By Robyn Silverman

My daughter’s questions started after a family friend got sick with Covid-19.

“If people are sick, they can just give them medicine so they get better, right?” my daughter asked with the hopeful perspective of an 11-year-old. “They can just go to the hospital so the doctors and nurses can help them?”

The questions stemmed from a positive update my husband gave about his martial arts buddy, John R. Cruz, a first responder being treated at Holy Name Medical Center in Teaneck, New Jersey.

He’s one of the lucky ones.

Not everyone is as fortunate. We’ve already surpassed 124,000 Covid-related deaths in the United States and nearly half a million dead worldwide.

For adults, these numbers are shocking. For children, they are unfathomable. Some can’t even conceptualize the notion of a single death.

It’s natural for parents to want to protect children from the feelings of worry and distress we are experiencing during this pandemic, but decades of research underscores that being honest with children is the best way to mitigate feelings of anxiety and confusion during uncertain times.

Even young kids are aware of the changes in the emotional states of adults and will notice the absence of regular caregivers, including grandparents.

So how do we talk to kids about death and dying during the coronavirus crisis? These are tough talks, no doubt about it. Here are six guiding principles, with sample prompts and scripts, to keep in mind.

Assess what’s age-appropriate

While parents should always be honest about death, the information you divulge may differ in amount and depth depending on the developmental age of your child.

How do you know where your child falls? It’s a best practice to follow your children’s lead and answer their questions without volunteering additional details that may overwhelm them. If you don’t know the answer, it’s OK to admit it.

Children between the ages of 4 and 7 years old believe that death is temporary and reversible, punctuated by the fact that their favorite cartoon characters can meet their doom and then come back the next day for another episode.

Even after you explain that “all living things die” and “death is the end of life,” it’s normal for young children to ask, “When can that person can come back?” Be prepared to remind them, kindly and calmly, that “once a body stops working it can’t be fixed” and “once someone dies, that person can’t return.”

Older children grow out of this “magical thinking” as they enter tweenhood, questioning the meaning of death during adolescence, while often seeing themselves as invulnerable to it. They may want to talk with you about why someone has died and need guidance about which resources they can trust for valid information about coronavirus and Covid-related deaths.

Ask your children, whatever their age: “What have you heard about the coronavirus and how someone might get it? What do you know about what happens when someone gets sick from it?” Clarify the difference between the virus and the disease and explain who is at the highest risk for becoming severely ill from Covid-19.

Prepare yourself

A conversation about death, especially when you are reporting on a family member or close friend, is especially difficult. You don’t want to just blurt out the news without carefully considering your words. Give yourself some time to gather your thoughts and take a couple of deep breaths.

Ask yourself: Do I want another supportive adult with me while I deliver this news? Where in my home would be best to discuss this with my child? Should my child have a special toy or comforting blanket with him or her when we have this conversation?

Even though it’s best to discuss what happened with your child before someone else tells them, taking a few minutes to calm yourself down and be present is important for you and for them.

Explain what happened

If someone in your children’s world does pass away from Covid-19, be sure to tell them honestly, kindly, clearly and simply. Experts agree that parents should avoid euphemisms such as “went to sleep,” “we lost her” or “went to a better place” to avoid confusion.

Instead, you might say; “Sweetheart, remember Grandpa got very sick and has been in the hospital for the last few weeks? His lungs stopped working and couldn’t help Grandpa breathe anymore. The nurses and doctors worked so hard to try to make Grandpa’s body healthy again but they couldn’t make Grandpa better. We are so sad and sorry. Grandpa died today.”

Then pause and listen. You may need to repeat your words a second time as distress can make it difficult to digest information.

Give room for the ups and downs of grief

In a time of suffering, it can be difficult to know what to say. Honesty about your own emotions gives children permission to be open about their own confusion, sadness, anger and fear.

You might admit: “This is all so hard to take in, isn’t it? I am feeling sad, and I’m crying because I miss Grandpa.”

Don’t be surprised if some of your child’s feelings come out all at once, while others may peek out days and weeks after the death of a loved one. Be ready for the unexpected and know that, when children grieve, they may be crying one minute and playing the next. This is normal.

“Grief is not a linear process,” said Joe Primo, CEO of Good Grief, in an interview on my podcast, “How to Talk to Kids about Anything.”

Good Grief is a New Jersey-based nonprofit organization that provides healthy-coping skills to children grieving the loss of a family member.

“Grief is like a roller coaster. It’s up, down, all around. For kids and adults alike, every single day is different. And as the grieving person, you have no idea how your day is going to unfold.”

Answer questions

Many children will ask for more information and want to know why their loved ones didn’t survive. Reiterate that your loved one had Covid-19 and the medical team worked very hard but the disease made it so the body could no longer work. You might tell your child about complications such as asthma that made it difficult to breathe even before the coronavirus.

It is also normal for your child to ask if you or others in their life will get sick or die of Covid-19 so be clear about the precautions your family is taking in order to stave off the illness.

“We are doing everything we can to stay healthy. We are washing our hands with soap and water, keeping our home very clean and staying away from others to keep from getting the virus,” you might say.

“We are also wearing masks and gloves when we are at the store to get groceries. And don’t forget, we are continuing to eat nutritious food, exercise and get good rest to keep ourselves strong.”

Provide ways to commemorate and honor

Given that social distancing is making it increasingly difficult, if not impossible, to grieve alongside loved ones as we typically do when someone dies, it’s imperative that we find a way to allow children to say goodbye and remember. Studies have repeatedly found that when children are part of funerals and celebration of life events, they fare better.

“Funerals are about mourning,” Primo noted, “and mourning is a core component of a child adapting to their new norm, expressing their grief, and getting support from their community.” Without these traditional markers, find other ways to honor your loved one.

For example, have a small home-based ceremony and commemorate the person’s life by planting a tree, doing an art project, reading a poem, eulogizing and saying goodbye. You can also collect letters, video tributes and memories from others and share them with your children. Many have used Zoom to remember those who died. Ask your children, “How would you like to honor and remember _______?”

This conversation may be one of the toughest you will have with your kids, and one that, given the numbers, will be part of many families’ reality as we cope with incredible loss from the coronavirus. It’s stressful for everyone involved — for your children and for you, too.

Continue to reach out for the support you need so you and your children can be cared for during this difficult time. Even while we must be socially distant, no one should have to grieve alone.

Complete Article HERE!

End-Of-Life Planning Is A ‘Lifetime Gift’ To Your Loved Ones

By Kavitha Cardoza

Talking about death makes most of us uncomfortable, so we don’t plan for it.

That’s a big mistake, because if you don’t have an end-of-life plan, your state’s laws decide who gets everything you own. A doctor you’ve never met could decide how you spend your last moments, and your loved ones could be saddled with untangling an expensive legal mess after you die.

Betsy Simmons Hannibal, a senior legal editor at legal website Nolo, puts it this way: Planning for the end of life isn’t about you. “You’re never going to really get the benefit of it. So you might as well think about how it’s going to be a lifetime gift that you’re giving now to your parents or your partner or your children. It really is for the people you love.”

Here are some simple, practical steps to planning for the end of life. These tips aren’t meant to be legal or medical advice, but rather a guide to ease you into getting started.

1. Name an executor.

If you’re an adult, you should have a will, says Hannibal. Estate planning is not just for the rich. “It’s not just about the value of what you own. It’s also the feelings that you and your loved ones have about what you own.”

If you own lots of valuable stuff — real estate, trust funds, yachts — you probably need a lawyer. But for most of us, a simple document could do. Your state or county bar associations usually keep a list of lawyers who do this pro bono. Or you could download an online form like Quicken WillMaker & Trust for less than $100. (Full disclosure: Hannibal works for Nolo, which owns Quicken WillMaker & Trust.)

She says the first thing you do is name (in writing) a person whom you trust to take care of everything when you die. In most states that person is called an executor; in some they’re called a personal representative.

Hannibal says it’s a good idea to choose someone from your family. “The most important thing is that you have a good relationship with them — and also that they have a good attention to detail, because it’s a lot of work to be someone’s executor.”

An executor would have to, for example, find all your financial assets and communicate with everyone you’ve named in your will. It’s a big ask, so Hannibal says just be upfront. She suggests asking the person directly, “Would you be comfortable wrapping up my estate when I die?”

2. Take an inventory.

List everything you own, not just things that are financially valuable — such as your bank accounts, retirement savings or car — but also those things that have sentimental value: a music or book collection, jewelry, furniture. Then list whom you want to leave what to.

If you have young children, name a guardian for them. Choose carefully, because that person will be responsible for your child’s schooling, health care decisions and value system.

Hannibal says pets are considered property under the law, so she suggests naming a new owner so that the state doesn’t do it for you.

Digital accounts are also part of your property. This includes social media accounts, online photos, everything in, say, your Google Drive or iCloud, online subscriptions, dating site profiles, credit card rewards, a business on Etsy or Amazon. Hannibal suggests keeping a secure list of all those accounts and the login and password details. Let your executor know where the list is.

Just as you write out specific instructions about your physical belongings, be clear about what you’d like to happen with your online information.

She says it’s better not to have a handwritten will, because proving you wrote it will require a handwriting expert. So keep it simple. Just type out your wishes and have two witnesses watch you sign and date it. Then have them do the same. Hannibal says by signing it, “they believe that the person who made the will is of sound mind, and that’s a pretty low bar.”

You don’t need to file your will anywhere; neither do you need to get it notarized for it to be legally binding. And don’t hide it. Hannibal says just tell your executor where you’ve kept a copy.

Remember that your decisions will change over time. So if you have a child, buy a house or fall out with a family member, update your will.

3. Think about health care decisions.

Your will takes care of what happens after you die. An advance directive is a legal document that covers health care and protects your wishes at the end of your life.

There are two parts to an advance directive. The first is giving someone your medical power of attorney so the person can make decisions for you if you can’t. The other part is called a living will. That’s a document where you can put in writing how you should be cared for by health professionals.

Jessica Zitter is an ICU and palliative care physician in Oakland, California. She says that we’ve become experts at keeping people alive but that quality of life can be forgotten.

She has seen thousands of situations of loved ones making difficult and emotional decisions around a hospital bed. It’s worse when family members disagree about a course of action.

You know the saying “The best time to plant a tree was 20 years ago. The second best time is now”? Zitter says with the coronavirus in the news every day, more people are realizing that these end-of-life conversations are important. “That tree was always important to plant. But now we really have a reason to really, really plant it. … That time is now.”

You may have heard of Five Wishes, which costs $5 and will walk you through choices, or Our Care Wishes, which is free.

4. Name a medical proxy.

Pallavi Kumar is a medical oncologist and palliative care physician at the University of Pennsylvania. Kumar says the most important medical decision you can make is to choose a person who can legally make health care decisions for you if you can’t. This person is sometimes called a medical proxy or a health care agent. Naming the person is the first part of the advance directive.

“Think about the person in your life who understands you, your goals, your values, your priorities and then is able to set aside their own wishes and be a voice for you,” she says. You want someone you trust who can handle stress, in case your loved ones disagree on what to do.

5. Fill out a living will.

After you’ve chosen your medical proxy (and named a backup), you need to think about what kind of care you want to receive. There’s no right or wrong; it’s very personal. The document that helps you do that is called a living will. It’s part two of the advance directive.

A living will addresses questions such as “Would you want pain medication?”; “Do you want to be resuscitated?”; and “Would you be OK being hooked up to a ventilator?”

Kumar says she asks her patients what’s important to them and what their goals are. For some with young children, it means trying every treatment possible for as long as possible, no matter how grueling.

“They would say, ‘If you’re telling me that a chemotherapy could give me another month, I want that month. Because that’s another month I have with my 6-year-old.’ ”

Other patients might want the exact opposite. “They would say, ‘I’ve gone through a lot of treatments and I … feel I’m not having as many good days with my kids. So if the disease gets worse, I want to spend that time at home.’ ”

Kumar says even among patients who are very sick with cancer, fewer than half have had conversations about how they want to die. So talk about your wishes. Once you’ve filled out the advance directive forms, share your decisions with your medical proxy, your loved ones and your doctor.

6. Don’t forget the emotional and spiritual aspects of death.

How you want to die is personal and about much more than just the medical aspect. For some, it’s about being at peace with God; for others, it’s being kept clean. Still others don’t want to be left alone, or they want their pets close by.

Angel Grant and Michael Hebb founded the project Death Over Dinner to make it easier for people to talk about different aspects of death as they eat. “The dinner table is a very forgiving place for conversation. You’re breaking bread together. And there’s this warmth and connection,” says Grant.

Some of the emotional and spiritual questions people talk about are “You were just in a big quake and death is imminent. What are you concerned about not having done?”; “What do you want to be remembered for?”; and “If you could have any musician play at your funeral, who would it be?”

Grant says reflecting on death automatically forces you to think about your life. “That’s the magic of it,” she says.

“We think it’s going to be morbid and heavy. But what these conversations do is they narrow down our understanding of what matters most to us in this life, which then gives us actionable steps to go forward living.”

Grant doesn’t believe a “good death” is an oxymoron. “A good death is subjective, but there are some things that I have heard over and over again for many years at death dinners. … A good death is being surrounded by love, knowing you have no emotional or spiritual unfinished business.”

Complete Article HERE!

Last wishes and clear choices

– Learning how to talk about end-of-life care

Before patients can state their preferences about dying, they need to talk about them first.

By

Conversations around end-of-life medical care can be challenging. Consider someone I’ll call Mrs. Jones, an elderly patient with advanced heart disease. When her doctor asked her to discuss the kind of care she wanted to receive at the end of her life, Mrs. Jones said that she had devoted a lot of thought to the matter and had clear instructions she wanted her family to follow.

First Mrs. Jones wanted to be buried near her family – above ground – and she wanted her grave to be covered with yellow and white flowers. Second, she wanted to be laid out not in a dress but in her nightgown and robe. And finally, she wanted to be buried with a treasured photograph of her boyfriend, which showed a handsome young man in military uniform.

But her doctor was asking a different question. Specifically, she needed to know how Mrs. Jones wanted the medical team to care for her as she was dying. Mrs. Jones said that she hadn’t thought about end-of-life care, but she would like to learn more about her options.

After discussing the choices, Mrs. Jones expressed some clear preferences. “I know for a fact that I not want to undergo chest compressions, and I don’t want anyone using tubes to breathe for me or feed me.” Her doctor arranged for Mrs. Jones’ daughter to join the conversation. The conversation wasn’t easy – Mrs Jones and her daughter cried as they talked – but afterward they were grateful that they had shared everything so openly.

Shilpee Sinha, MD, Mrs. Jones’ doctor, has these conversations every day. She is the lead physician for palliative care at Methodist Hospital in Indianapolis, where she specializes in the care of dying patients. She also teaches medical students and residents how to provide better care for patients at the end of life.

Sinha is part of a relatively small cadre of such doctors nationwide. It is estimated that only about 4,400 doctors specialize in the care of terminally ill and dying patients. The US is currently facing a shortage of as many as 18,000 of these specialists. There is only one palliative care specialist for 20,000 older adults living with severe chronic illness.

On average, 6,800 Americans die every day. The majority of deaths are anticipated. Consider that about 1.5 million people enter hospice care each year. This means there is ample opportunity for many patients to talk with their doctors and family members about end-of-life care.

Before patients can explore and express their preferences about dying they first need to have a conversation like the one between Sinha and Mrs. Jones. In too many cases, no such conversation ever takes place. Patients often don’t know what to ask, or they may feel uncomfortable discussing the matter. And doctors may never broach the subject.

At one end of the spectrum, doctors can do everything possible to forestall death, including the use of chest compressions, breathing tubes, and electrical shocks to get the heart beating normally again. Of course, such actions can be traumatic for frail and dying patients. At the opposite end, doctors can focus on keeping the patient comfortable, while allowing death to proceed naturally.

And of course, end-of-life care can involve more than just making patients comfortable. Some patients lose the ability to eat and drink, raising the question of whether to use tubes to provide artificial hydration and feedings. Another issue is how aggressively to promote the patient’s comfort. For example, when patients are in pain or having trouble breathing, doctors can provide medications that ease the distress.

Another issue is ensuring that the patient’s wishes are followed. This does not always happen, as orders can be lost when patients are transferred between facilities such as hospitals and nursing homes.

Fortunately, most states across the country are beginning to make available a new tool that helps doctors and patients avoid such unfortunate outcomes. It is called POLST, for Physician Orders for Limiting Scope of Treatment. First envisioned in Oregon in the early 1990s, it grew out of a recognition that patient preferences for end-of-life care were too frequently not being honored. Typically, the doctor is the one to introduce POLST into the conversation, but there is no reason patients and family members cannot do so.

The cornerstone of the program is a one-page form known in Indiana as POST. It consists of six sections, including cardiopulmonary resuscitation (CPR); a range of other medical interventions, from admission to the intensive care unit to allowing natural death; antibiotics; artificial nutrition; documentation of the person with whom the doctor discussed the options; and the doctor’s signature.

The POST form helps to initiate and focus conversations between patients, families, and doctors around end-of-life care. It also fosters shared decision making, helping to ensure that all perspectives are taken into account, and ensuring that patient wishes are honored.

POST can be applied across all settings, from the hospital to the nursing home to the patient’s home. It can be scanned into the patient’s electronic medical record, ensuring that it is available to every health professional caring for the patient. And it does not require a notary or an attorney (or the associated fees), because it is a doctor’s order.

Of course, merely filling out the form is not enough. The patient’s wishes can be truly honored only if the patient and family understand the options, have the opportunity to pose questions, and trust that their wishes will be followed. In other words, POST achieves its purpose only if it is based on the kind of open and trusting relationship Dr. Sinha had developed with Mrs. Jones.

Providing such care isn’t easy. “Our health care system pays handsomely for curative care,” Sinha says, “but care at the end of life is probably the most poorly compensated kind that doctors provide. This can make it difficult to get hospitals and future doctors interested in it.” Thanks to initiatives such as POLST and doctors such as Sinha, however, such care is finally getting more of the attention it deserves.

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