Category: The Dying Process

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In Life’s Last Moments, Open a Window

My hospice patients were dying, but they still longed for fresh air and birdsong.

By Rachel Clarke

A furrowed brow and flailing arms were all we had to go on. The grimacing, the way the patient flung his head from side to side — all of it signified an unvoiced anguish. We tried talking, listening, morphine. His agitation only grew.

All cancers have the power to ravage a body, but each assails in distinctive ways. One of the particular cruelties of a cancer of the tongue is its capacity to deprive a person of speech.

Some of us thought he must be suffering from terminal agitation, a state of heightened anxiety that sometimes develops as the end of life draws near. But the junior doctor on the team, Nicholas, was convinced that we could unlock the source of our patient’s distress and volunteered to stay behind in the room.

Nicholas reappeared about an hour later. “You can understand his speech,” he announced. “You just have to really listen.”

When I re-entered the room, the reclining chair that the patient — a tall, angular man in his 80s — had been thrashing around in had been turned to face out onto the garden and the double doors were open wide. Now he sat calmly, transfixed by the trees and sky. All he had wanted was that view.

For a decade, I have worked as a doctor in Britain’s National Health Service. We are an overstretched, underfunded health service in which too few doctors and nurses labor with too few resources, struggling to deliver good care. Burnout among staff is endemic, so much so that it threatens to stifle the kindness and compassion that should be the bedrock of medicine.

But then there are the moments when helping someone is easy: Just nature is enough.

Before I specialized in palliative care, I thought the sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance. And yet, in the hospice where I work, I am often struck by the intense solace some patients find in the natural world.

I met Diane Finch, a patient, in May, on the day her oncologist broke the devastating news that further palliative chemotherapy was no longer an option. She was 51. From that point on, her terminal breast cancer would run its natural course, medicine powerless to arrest it.

“My first thought, my urge, was to get up and find an open space,” she told me on that first meeting. “I needed to breathe fresh air, to hear natural noises away from the hospital and its treatment rooms.”

At first she fought to preserve herself digitally, documenting every thought and feeling on her computer before they, and she, were lost forever. But one day, as she was typing frantically, she heard a bird singing through her open window.

“When you come to the end of your life, you get the sense that you don’t want to lose yourself, you want to be able to pass something on,” she told me later. “When I had whole brain radiotherapy, I felt as though something had dropped out, as if everything I said needed to be saved. It was all running away from me.

“Somehow, when I listened to the song of a blackbird in the garden, I found it incredibly calming. It seemed to allay that fear that everything was going to disappear, to be lost forever, because I thought, ‘Well, there will be other blackbirds. Their songs will be pretty similar and it will all be fine.’ And in the same way, there were other people before me with my diagnosis. Other people will have died in the same way I will die. And it’s natural. It’s a natural progression. Cancer is part of nature too, and that is something I have to accept, and learn to live and die with.”

Ms. Finch recorded a song based on the peace she felt listening to the bird song, and it was enough to bring her some relief from what — up to that point — had been almost feverish efforts at self-preservation.

Another patient, whom I admitted in July with about a week to live, was mostly concerned that I keep the windows open, so that he could “keep on feeling the breeze on my face and listening to that blackbird outside.” I rushed to make sure of it.

Shortly before his death from pancreatic cancer at 59, in the 1990s, the British playwright Dennis Potter described the exaltation of looking out at a blossom that had become the “whitest, frothiest, blossomest blossom that there ever could be” from his window.

“Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous,” he told an interviewer.

People often imagine hospices to be dark and dismal places where there is nothing left to experience but dying. But what dominates my work is not proximity to death but the best bits of living. Nowness is everywhere. Nature provides it.

Complete Article ↪HERE↩!

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When life becomes unbearable, stopping eating and drinking is an exit strategy

By Kie Relyea

Pam Munro made the last days of her life public because she wanted people to know they could choose how and when they die, as she did.

The 62-year-old Blaine woman died July 17 – at home and surrounded by family and friends, 12 days after she voluntarily stopped eating and drinking instead of waiting to lose her mind and dignity to Alzheimer’s disease.

Bellingham resident Phyllis Shacter has been fulfilling the promise she made to her late husband, Alan Alberts, that she would share his decision to end his life by voluntarily stopping eating and drinking, or VSED, rather than entering the late stages of Alzheimer’s.

He died in April 2013, about 9 1/2 days after he refused food and water.

“How we die and what we say we want at our death is extremely important,” Shacter said, adding that Alberts died peacefully and consciously. “I want to have a good death. Who doesn’t?”

Both Munro and Alberts stopped drinking and eating when they still were mentally competent to do so. For those who choose this final exit, death usually occurs within one to three weeks.

People die from the effects of dehydration, which shuts down their kidneys and sends them into a coma, before they do from starvation.

In an interview in the days before her death, Munro said that reading a story in The Bellingham Herald about Alberts’ decision and hearing a talk Shacter gave about it – both occurred in September 2015 – made her decide that was how she would die.

Munro wanted to remind others who were ill of that choice, while they still had the ability to make it.

“You’re lost,” she said, “and then it’s too late.”

Her husband, Steve Munro, 66, said in an interview on Sept. 26: “I understood her fears. She didn’t want to be a vegetable, not know who people were.

“My job as a husband was to support what she wanted to do,” he added. “It wasn’t my choice. It was her choice.”

Growing awareness

Deciding to hasten death by refusing to take food and liquids will be discussed at two events this month.

The first is on Oct. 14-15, at Seattle University School of Law. It is believed to be the first national conference on VSED, and it will delve into legal, ethical, religious and other considerations around the topic.

The second is Oct. 28 in Bellingham, when VSED will be discussed as an option at the end of life.

Shacter will speak at both events.

Alberts’ and Pam Munro’s decisions to go public with their choices are helping to bring greater attention to VSED as an end-of-life option, including for those who are terminally ill but don’t qualify for Washington state’s Death with Dignity measure, or don’t live in one of the five states that allow it.

Washington state’s law went into effect in March 2009. It allows terminally ill adults who have been told by their doctors that they have six months or less to live to ask for a prescription for lethal doses of medication.

Patients making the request must be mentally competent, must ask twice verbally and again in writing, and must be able to take the medication themselves. They can rescind their request at any time, and they must reside in Washington state.

The decision to forgo food and water has been recognized by courts, as long as the person making the decision is competent at the time.

Even though it’s an option in all 50 states, VSED hasn’t received as much attention as the hot-button topic of Death with Dignity.

But that is shifting, according to Thaddeus Pope, a law professor and bioethicist who has delved into legal and ethical aspects of VSED and is a proponent.

He will be speaking at the VSED conference in Seattle. Meanwhile, End of Life Washington is assembling a team of people who will focus on it. The Seattle-based organization helps people plan for the last days of their lives.

Certain Death with Dignity requirements prevent people with Alzheimer’s and other forms of dementia from using the law when they enter the advanced stages.

Alzheimer’s attacks the brain. It is a progressive, irreversible neurological disorder that is the most common form of dementia. Most victims are older than 65, but Alzheimer’s can strike in the 40s or 50s.

Symptoms include gradual memory loss, impaired judgment, disorientation, personality change, difficulty in learning and loss of language skills. There’s no cure, though treatment can temporarily slow the worsening of symptoms. At the end, those with Alzheimer’s have to depend on others to take care of all their daily needs.

It is the sixth leading cause of death in the U.S., and people with Alzheimer’s live an average of eight years after their symptoms become noticeable to others. But survival can range from four to 20 years, according to the Alzheimer’s Association.

More than 5 million Americans have Alzheimer’s and that number is expected to skyrocket to as many as 16 million in 2050.

A window of time

VSED isn’t without controversy. Not everyone in Pam Munro’s family supported her decision, and some believe that hastening death this way is suicide.

Patients must be mentally competent, or in their right mind, to forgo food and drink. They must be able to indicate that they know doing so will lead to death, as Pam Munro did in written statements that were part of the documents she filled out as she planned for the end of her life.

Timing is important. People who choose it don’t want to start and die too soon. But if they wait into the advanced stages, dementia might make them forget that is what they wanted for themselves when their lives became unbearable.

“That window was getting smaller and smaller. Her Alzheimer’s was progressing quickly,” said Ashley Benem, a Bellingham death midwife who was helping guide and monitor Pam Munro in the last months of her life.

When Pam Munro was ready, she started eating less and then moved into a juice-only fast. Because of her Alzheimer’s she didn’t have much appetite anyway. A friend made her her last meal, a green smoothie. She stayed hydrated until the day she started VSED.

She had medical support from her doctor, who gave her a prescription for medication for pain and anxiety should she need it. She received foot massages and back rubs, spritzes of water to help relieve dry mouth, and a rotating shift of friends and family to be with her as she waited to die the way she wanted.

Complete Article ↪HERE↩!

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How to sit with someone who’s dying

Don’t feel you have to hold back your emotions during this time.

By Carol Rääbus and Roisin McCann

When his grandfather died in the emergency department of a Hobart hospital, Andreas was by his side.

“I was really frightened.”

It was Andreas’s first experience of being with a dying person and it made him anxious.

“As his breathing slowed down and he was taking less and less breaths, I was worried about how I was going to feel when he didn’t take any more,” he says.

“And then he had one final really deep inhale and exhale, and it was fine.

“I wasn’t panicked at all. I thought ‘Oh, it’s not weird’.

“Death isn’t weird at all, really. It’s quite normal and kind of OK.”

The idea of sitting with someone who’s dying, particularly when they’re someone you care about, is something many of us find overwhelming.

What’s going to happen? Should you talk about the football? Ask them what they want at their funeral? How you can make granddad feel more comfortable?

We asked a range of people, who regularly spend time with those who are at the end of their lives, to share what they’ve learnt about being with someone who’s dying.

When should I visit someone in hospital or hospice?

Hospice volunteer Debra Reeves says her first bit of advice is to find out when you’re allowed to visit a hospital ward or facility.

Hospital wards often have compulsory quiet hours when no-one is allowed to visit, and those hours are often different from ward to ward in the same hospital.

Check in with a nurse, or someone who’s been there a while, to find out if the person you want to see is up for visitors. The same goes for visiting someone in their own home — always check if it’s a good time for you to be there.

Should I bring food, photos or mementos?

Again, check first. Ask what the rules are at the facility beforehand, or ask the person whose home it is.

Smells can be strongly linked to memories, so if you know your grandma, for example, always loved the smell of roses, take them in.

End of Life Doula Leigh Connell recommends not wearing strong perfumes as they can be overwhelming.

Bringing food is often one of the first things we think of as a way of comforting someone. Depending on the situation, the person might not be able to eat something you bring, but the gesture can still be appreciated.

“If you know they like the smell of mandarins, take mandarins, even if they don’t get to eat them,” Leigh says.

Meaningful photos and items can be comforting for the person, but don’t take in too many things and make clutter.

What should I say?

Spending time with a dying loved one can be scary, but worth it for them and you.

Not knowing what to say is one thing many people in this situation worry about.

Those who spend a lot of time with the dying all tend to say the same thing — you don’t need to say anything.

“Don’t say a lot. Let them talk,” Maria Pate from Hospice Volunteers says.

“Or let the silence be there.”

Launceston priest Father Mark Freeman says often simply being in the room can be enough comfort for the person.

“Often that presence is a reassurance to them that things are all OK,” he says.

If being silent and still is difficult, you could take something with you to keep yourself busy.

Leigh’s suggestion is to try something you know the person liked doing — playing cards or knitting. Even if you’re not good at the activity, it can make a connection.

Andreas’s advice is to be open and admit you’re scared.

“If you’re not comfortable talking to someone who has a terminal diagnosis, maybe just say, ‘I’m having trouble with this’,” he says.

Should I hug them if they look frail?

Giving a loved one a hug is often the quickest way to let them know you care.

But if you’ve never hugged your uncle before, don’t feel you have to.

Though it can be intimidating when someone is particularly frail, a gentle touch of the hand can bring a lot of peace.

Gentle touch, like holding a hand, can be enough to let someone know you’re there and you care.

Maria recommends a very gentle hand massage as a way of making connection and comforting someone.

Father Mark agrees.

“This lady was fairly well out of it, I went to talk to her, [took her hand] and she opened her eyes and looked at me — and had never met me before — and said, ‘Oh Father, thanks for coming’,” he says.

Again, it’s a good idea to ask for permission before touching someone. They might not be in the mood, or might be experiencing pain and not want any touch.

I think they’re dying now. What do I do?

Until you’ve gone through it, none us really know how we will react if we’re there at the time someone’s life ends.

Father Mark’s advice to families he visits is to “embrace the reality” of what’s happening and allow themselves to feel.

“They don’t have to panic [about the fact] that they just want to cry, or they’re so frustrated and they’re sad and hurt, and angry even,” he says.

“All those things can be a part of it.”

Father Mark says he encourages families to stay in the room if possible and be a part of what’s happening. Often what’s happening is not much at all.

Debra was with a family in an aged care facility when their loved one was dying.

“They went straight into storytelling,” she says.

“He was already unconscious. His fingers were already turning black.

“They held vigil, they talked around the bed. They used his name a lot and they talked to him.

“They gave him the most beautiful farewell. It was lovely.”

No-one is dying yet. But can I be prepared when it comes?

Sometimes we don’t get any opportunities to sit with someone before they die — death can sometimes come when no-one is expecting it or ready for it.

Spending time with strangers who are dying has given our interviewees a sense of wanting to make sure they and their families are as ready as possible for that moment.

Their advice is to think ahead now.

“I’m going to make that advanced care directive, I’m going to write that will,” Debra says.

“And I’m going to resolve those relationships so that when I am on my deathbed, I’m at peace. And my family can be at peace as well.”

Complete Article ↪HERE↩!

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What to Expect When Witnessing a Loved One’s Death

By ,

Nothing prepares you for being present at the death of a loved one. The emotional enormity of the experience and its relative rarity give survivors little frame of reference to draw from.

“The time of life we call dying is an extremely difficult part of the life cycle, but a normal part,” says palliative-care physician Ira Byock, author of Dying Well. “The nature of it isn’t medical, it’s experiential.”

The death experience unfolds differently in each situation. But those who have witnessed “the passing” observe the following:

The dying person may talk to people not in the room, or may see other places.

“A few hours before she died, my mother suddenly said, ‘No, I’m not Sarah [her mother’s name],’ but she didn’t say it to any of us in the room. Then she was telling Dad she loved him. It was like she was having two conversations at once. One of the last coherent things that she said was, ‘Are you the gentleman who’s come to meet me?'” — Michele, a North Carolina mother of four

Dying people often seem to be in two worlds at once: here and not here. They may talk to or gesture toward people who aren’t visible to others in the room. Or they may describe things or places they see, such as a garden, a favorite location, or lights.

These “deathbed visions,” as British neuropsychiatrist Peter Fenwick, a neuropsychiatrist and specialist in near-death experiences, calls them, almost always take place when the person is clearly conscious — even though witnesses sometimes mistake the visions and speech for signs of delirium. Some dying people switch easily between conversations with those at the bedside and with someone unseen. The people and places are usually connected with feelings of peace and security. In the U.S. and the U.K., nearly three-fourths of visions are of friends and relatives who aren’t living, says Fenwick, author of The Art of Dying. About 13 percent of people seen are religious figures, compared to 50 percent of people in India who see Hindu figures. Seeing strangers is relatively rare.

Dying may seem to involve great physical effort.

“My mom had a dry mouth and scary raspy breath that worsened over a few days. But she didn’t die until the day we gave her morphine. I felt responsible, wondering if we had rushed things.” — Emma, a 45-year-old artist in San Francisco.

“Some go gently — you look up and their chest is no longer moving,” palliative-care physician Byock says. “But for others it’s hard to die. It’s like an animal shedding its skin, a physical struggle to wriggle out of this life.”

Younger people and those who are healthy aside from a single fatal illness often have the most difficult time. But dying can be effortful for anyone. Palliative care — comfort care including pain relief — improves quality of life to life’s end. Unfortunately, say hospice workers, families are often reluctant to use painkillers out of a misguided fear that they curb awareness or hasten the death process.

Morphine dosages given in hospice are only enough to ease pain, Byock says. Even with good comfort care, certain reflexive symptoms of the dying process, such as labored breathing, can still appear as distress. Mental confusion is another common effect of the organs — in this case, the brain — shutting down. (See 10 Signs Death is Near).

The personality of the dying person usually stays consistent to the end.

“My mother never lost her sense of humor. I was complaining about my brother not coming to my daughter’s birthday party. ‘So shoot him!’ she said in her typically droll way. My mother’s last words to me were instructions to kill my brother!” — Dawn Barclay, a New York manager in her 40s, who saw her mom through 18 months of complications of heart surgery and stroke

People tend to die as they lived, says Maggie Callanan, a hospice nurse and the author of Final Gifts, who has witnessed more than 2,000 deaths. “Nice people get even nicer, manipulators manipulate, funny people die funny,” she explains. “We all have ways of navigating through life, and when dying, those tendencies are intensified by 10.”

More things you may witness at a loved one’s death

The dying person may speak in metaphors.

“On the day she died, my mom kept talking about traveling, like, ‘Let’s go, what are we waiting for . . . oh, there’s a plane ahead of us . . . no, that’s not the right plane.’ She also told my dad that he should take a later flight. She was definitely going someplace.” — Patricia Anderson, 45-year-old Ohio insurance account executive

“The dying often use symbolic language, especially to indicate an imminent change or a need to go forth — to die,” says hospice nurse Callanan. Travel is one of the more common themes, such as talking about modes of transportation or about going somewhere (making a flight, a golfer talking about going golfing).

The person may also allude to “making ready” (packing, making checklists, issuing directions). Some observers think that this talk of journey-making is a subconscious way dying people let family members know they know they’re passing away. It’s a signal for families to offer reassurance — that they, too, understand what’s happening and to convey that although they’re grieving, they’ll look after one another and be all right.

“The family’s reassurances that they’ll be all right often bring the peace a dying person needs,” Callanan says.

The dying person may seem to choose the final moment.

“The hospice people had told me that sometimes people won’t die when their loved ones are in the room, especially if the person has played a protective role in their lives. Or that they hang on if they feel you can’t let them go. So before I stepped out to get something to eat, I told my Dad that if he had to go it was OK, that he had done everything he could to raise us and we could raise ourselves now. Not seven minutes later, a nurse met me in the hall and said he was gone. I guess I felt a bit cheated because I wanted to witness this crossing over.” — Lise Funderburg, Philadelphia writer

Many people report feeling “cheated” or as if they “let down” a loved one by not being there at the moment of death. Others blame themselves as “failures” for inadvertently allowing the person they love to die alone. In many cases the survivor had stayed glued to the bedside for hours, determined to be there, turning away or stepping out for only an instant.

But those who work in hospice think it’s the other way around: Passing away often happens minutes after loved ones leave the bedside, as if the dying person is choosing to spare them the final moment. This is especially true, they say, with individuals toward whom the dying person feels protective.

Also common: The dying person seems to hang on to wait for someone to visit or something to be said. One South Carolina woman’s mother lingered in hospice for months until she received the news that her also-ill, adored younger sister had died. She died herself the next morning. “It was as if she wanted to spare her sister her own news,” her daughter said.

The dying person often seems peaceful at the end.

“She opened her eyes, and the house grew quiet. Her face softened and all the wrinkles and tension went away. Later the hospice nurse recommended that I not watch them take the body out because it had stiffened, and I appreciated that because now I can remember the relaxed mother I saw last.” — Aoife, a designer from Northern California

Especially when the route has been long and marked by physical struggle, many people observe that the moments around death itself are calm. “So many people I talk to about dying tell me they wish they could die in their sleep. I’d estimate 95 percent of people dying naturally from illness go into brief coma — like a profound sleep state — before they die,” hospice nurse Callanan says. “So the good news is that most of us do die in our sleep.”

Jo Reichel, a teacher in Michigan, sat watching the Olympics with her father the morning he died after a summer full of repeat hospitalizations. “I was sitting on the floor next to his chair and kept looking between the TV and him. At 6:30 he was alive, and by 6:32, he’d simply stopped breathing. At first I wasn’t even sure I should wake my sisters to tell them, because he looked so relaxed.”

For Frances, an Ohio accountant, the moments after death were unreal but not frightening. “I’d never been in the room with a dead person before. But I had a strong sense that body wasn’t my father any more. It felt like he had up and left the room; it was terribly sad but also strangely peaceful.”

Witnessing a death is often transformative and brings survivors close.

“Seeing a person you love dying taps into the best parts of your nature.” — Lise Funderburg

Before experiencing the death of a loved one, many people view the prospect with dread. Afterward, they often look back on their death-witnessing experience as having been a horrible, grief-stricken time that nevertheless brought certain gifts. Among these: new insights into their own capacity for selfless love and caring, renewed or intensified bonds with other family members, a new respect for siblings or medical staffers, a healing of old wounds.

“The situation asked for grace, patience, and charity, so something I actually benefited from was to see I had a fairly deep capacity for those things that hadn’t been called on in the same way before,” says Funderberg, who wrote about her father’s long final illness in Pig Candy: Taking My Father South, Taking My Father Home. “Someone dying is a great prioritizer. What does something like the resentment you were holding onto matter now?”

To be sure, the passing away of a loved one can be almost unendurable. That in the end it is endurable seems to be both its blessing and its curse.

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Not Taught in Med School: Interpreting Dreams of Dying People

A hospice doctor’s TEDx Talk about his research on end-of-life dreams

By Emily Gurnon

When Dr. Christopher Kerr was a young physician, he visited a patient he calls Tom, who was very ill. Outside the room, Kerr told a nurse they could try antibiotics — that Tom had more time.

“Nope, he’s dying,” the nurse replied, without even looking up.

How did she know? Kerr asked.

“Because he’s seen his deceased mother,” the nurse said.

Kerr, chief medical officer at Hospice Buffalo in New York, discovered he needed to learn more about what end-of-life experiences meant.

He then led a research team from the Palliative Care Institute in Cheektowaga, N.Y. in a long-term study on dreams and visions in the dying. Based on extensive interviews with people who were dying, they examined what their dreams and visions consisted of, whether they perceived them as positive or negative and whether the dreams might serve as a predictor of when death would come.

In October 2015, after the results were published, Kerr gave a TEDx Talk about this for an audience at  Asbury Hall at Babeville, in downtown Buffalo.

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.

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I Know You Love Me — Now Let Me Die

A physician laments the often-excessive care of older adults at the end of life

By Louis M. Profeta, M.D.

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.

These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.

She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”

You see, that’s how she used to die. We saw our elderly different then.

Still the Same Person

We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.

We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.

‘Enriched and Happy’

We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.

We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.

We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says: “It’s time to come home.”

Adding Time but Not Life

This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to “keep her safe.”

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.

She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.

‘We Stopped Seeing Her’

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.

We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.

A Slow, But Enormous Change

This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine.

Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.

Nearly 50 percent of the elderly U.S. population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways.

‘What in the Hell Were You Thinking?’

We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”

When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

Complete Article ↪HERE↩!