Month: July 2017

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‘Are you saying I’m dying?’ Training doctors to speak frankly about death

Two employees from Alive Hospice take on acting roles as a terminally ill patient and a family member as part of a training simulation to help a doctor learn to speak openly about end-of-life care.

By Max Blau

[T]he doctor pulls up a chair next to his patient, a 74-year-old woman with lung cancer. He tells her she doesn’t need more chemotherapy. Her eyes perk up; has she beaten her cancer? As it turns out, no. Her cancer has metastasized. She only has six months to live, at most. But her doctor is unable to find the right words.

“My cancer’s not gone? I thought it was getting better,” the patient says, bewildered.

“That’s the tough part …” the doctor replies.

“So, no further treatment?”

“I think we need to focus on quality [of life] over quantity.”

“Are you saying I’m dying?”

From the other side of a two-way mirror, Anna-Gene O’Neal listens closely. She’s set up this simulation — the prognosis is part of a script; the patient is an actor; the physician is being recorded — to improve the way he broaches the topic of death with real patients. O’Neal hears the mock patient all but pleading with the doctor to give her a direct answer. He struggles to do so. After a few minutes, she opens the door to end the simulation.

O’Neal, who runs Alive Hospice here in Tennessee, launched the SHARE simulation lab last year. Participants run through four scenarios. The actors playing patients reply with all the emotions — confusion, denial, anger, grief — that doctors might encounter in real exam rooms. Afterwards, O’Neal sits with the doctors as they watch tape of these interactions on a big-screen TV.

Faced with the uncomfortable task of discussing death, doctors often avoid the topic. Only 17 percent of Medicare patients surveyed in a 2015 Kaiser Family Foundation study said they had discussed end-of-life care — though most wanted to do so. Since that study, Medicare has begun reimbursing providers for having these conversations. Yet still, just a fraction of Medicare recipients at the end of life have those talks with their doctors.

In response, advocates for improving end-of-life care have launched training sessions for doctors around the country.

In California, Stanford’s palliative medicine department has trained dozens of hospice nurses using exercises similar to those carried out here by Alive. In New York, oncologists at the University of Rochester Medical Center observe their peers having conversations with real patients facing terminal illness. In Arizona, the administrators of Phoenix-based Hospice of the West hold regular training sessions, complete with small group discussions, at staff meetings.

Simulators with live actors have intuitive appeal, especially since doctors rarely get hands-on experience with these tough conversations in medical school. But Dr. Scott Halpern, director of the University of Pennsylvania’s Palliative and Advanced Illness Research Center, said there’s little evidence that simulators are any more effective than any other clinical training to improve end-of-life counseling. They show a “tremendous amount of face validity,” he said, but they must be held “to a standard of showing benefits for patients, not a standard of an appealing anecdote.”

O’Neal, 50, agrees more evidence is needed. But she’s also so gung-ho about her simulator that she’s pushing to expand it across the country. Four health organizations — including faith-based Ascension Health — have agreed to let Alive train their clinicians. Later this year, O’Neal plans to work with medical students at one school in Tennessee. Down the road, she hopes to get some independent practice associations to require their members to undergo her training.

“It’s about doing the right thing,” O’Neal said. “I feel strongly that if you do the right thing by people, they’re going to make different decisions.” That shift could lead to more of what she calls “good deaths,” with patients fully aware of their prognosis and able to choose whether they want aggressive, long-shot treatments or would prefer to simply have their pain managed while they spend their final days with friends and family.

Alive Hospice CEO Anna-Gene O’Neal chats with a doctor who went through a simulated scenario about how he can improve his communication with patients.

The little things that can make a big difference

Two of O’Neal’s closest friends died young from breast cancer. Seeing their hospice nurses bring light to the darkness of death prompted O’Neal to think back on her own professional experiences caring for babies as a neonatal nurse and for the elderly as a health care executive. What stood out: the power of clear, concise communication between clinician and patient.

O’Neal came to believe health providers in all specialties should be trained to have such direct conversations. In 2012, she was hired as CEO of Alive Hospice, a nonprofit chain of hospice care facilities serving more than 3,500 patients and families a year in central Tennessee. She soon realized that many Americans lived in “a crisis of denial of our own mortality,” in part because “medical institutions encourage us to never give up.”

So she launched the SHARE simulator. Clinicians pay to participate — $350 to work through four scenarios and then watch the videos and get feedback from O’Neal or her staffers. (To give doctors more privacy, Alive deletes the footage after each session, handing them the only copy so they can review it later if they’d like.)

The work unfolds in a low-slung brick building near Nashville’s Music Row, in a room that looks like a typical hospice or hospital room, set up with a bed, a couch, a box of tissues, and a stack of travel magazines. Tiny microphones dangle from the ceiling to record audio without intruding on the intimacy of conversations. Video cameras shaped like domes are mounted on the walls.

So far, O’Neal has trained 12 doctors and 65 other clinicians, including nurses and social workers. O’Neal said some have already tweaked their communication style: Maybe they’re more comfortable with long pauses after breaking hard news to patients, or more aware of body language that may come off as too stern.

“Watching yourself, you get a feel for your posture, whether you’re using specific phrases, looking a person in the eye, or keeping focus on them,” said pulmonologist Dr. Richard Fremont. “It was helpful seeing what I thought I was doing.”

Dr. Robert Taylor, a nephrologist based in Nashville, initially found the cameras in the training room unnerving. But the actors quickly pulled him into the scenario.

“It’s awkward to see yourself,” he said, describing the experience of watching the footage later. But he noticed little things, like his posture and the inflection in his voice. When he saw the mock patients’ reactions, he realized that little shifts in his own approach could change their perception of the conversation.

Taylor said he’s been committed to frank discussions with patients ever since he recognized, early in his career, that dialysis patients rarely got a full picture of their options. Their doctors were often focused on keeping them alive. But the disease and the treatments often make them “so fatigued that it’s not the quality of life they desire,” he said. Ever since, Taylor said he’s taken pains to better communicate all options to his patients; he wanted to go through the simulator to hone that delicate art. “It can alter what you do,” he said, “but also confirm your answers.”

O’Neal said the simulator challenged other doctors’ views that a patient’s death must inevitably be viewed as a failure.

“Once you get doctors into the training, you create an opportunity for them to be vulnerable and see themselves differently,” O’Neal said. “Whether they admit to change or not, they will change.”

A political divide over end-of-life conversations

When the idea of paying doctors to talk about dying was first debated – during the early, bitter fights over the Affordable Care Act in 2009 – conservatives warned that such conversations could be a pretext for pushing the frail and elderly to give up on treatment. Former Alaska Gov. Sarah Palin said funding of end-of-life counseling amounted to a “death panel.” Iowa Sen. Chuck Grassley said it could enable “pulling the plug on grandma.”

The debate still rages: Earlier this year Iowa Rep. Steve King introduced the Protecting Life Until Natural Death Act, which would end federal reimbursements for end-of-life discussions. King has described such conversations as “intolerable to those who respect the dignity of human life.”

But despite such efforts, O’Neal sees growing support for her approach on Capitol Hill. Last month, a bipartisan group of lawmakers — including Democratic Sen. Mark Warner of Virginia and Republican Sen. Johnny Isakson of Georgia — filed a bill that would provide $50 million to fund access, education, and training related to end-of-life treatment for terminally ill patients.

“Encouraging patients and their families to have these conversations with their physician helps provide peace of mind and undoubtedly increases the likelihood a patient’s care will be consistent with their wishes,” Tennessee Congressman Phil Roe, one of the bill’s sponsors, said in a statement.

O’Neal concurs: Such conversations, she said, empower patients to embrace death on their own terms — and can make those final days “the most meaningful part of the human experience.”

“If somebody’s faith is such that as long as there’s a beating heart, you keep doing everything, we’re 100 percent behind that,” she said. “But if someone says, ‘if I can’t walk to play 18 holes of golf, I’m done,’ we have to respect that as well.”

A doctor, sitting inside Alive’s training room, watches footage of his interaction with a patient and her daughter.

A second chance

O’Neal asks one of her staffers to turn on the big-screen TV in the simulator room so the doctor can review his performance with the 74-year-old patient. As the footage rolls, the doctor grips one of the arms of his chair, bearing a slight grin of discomfort as he watches his fumbling attempts to tell the mock patient she’s dying. Soon, he’s critiquing himself:

“I think I would have been much less polite if I wasn’t on camera …”

“I would’ve been more blunt …”

“That could’ve been done faster …”

After he’s finished, she chimes with nuggets of advice: Don’t let her chase answers. Communicate like it’s a conversation. Honesty is a form of compassion.

“It’s intimidating,” O’Neal reassures him.

The second scenario goes far better. In it, the same patient returns two weeks later with a slew of strange treatment suggestions a relative found on the internet, including a raw beet diet and blood transfusion at a clinic in Juarez, Mexico. The doctor listens intently, careful to let her finish, mindful of his body language.

After she’s done, he leans forward and steers the conversation in another direction. He makes eye contact.

Then, he says in a calm empathetic tone: “We need to start thinking ahead.”

Complete Article HERE!

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Caring for my beautiful husband as he died and through the days that followed

After Morgan’s second surgery he couldn’t remember Fiona’s name, but when asked who she was he answered “the love of my life”.

Who is the best person to care for someone who has died? Sometimes, a person who loved them when they were living. Dr Fiona Reid shares her experience caring for her husband Morgan throughout his illness and in the days after his death.

My husband Morgan was a kind, active and talented man. I felt tremendously lucky when I met him and continued to do so throughout our years together.

Morgan was remarkably fit, working as a stuntman internationally. He trained every day and could perform feats of acrobatics and skill. So it came as a shock when he called me at work one day to tell me he was having difficulty spelling. My heart fluttered and my stomach turned over. I felt an intense sense of dread but tried to convince myself that I was overreacting.

I told him to stay at home and that I would be there shortly. I drove home and held Morgan in my arms. We both knew something was very wrong. Despite this, I was totally unprepared for what happened next; for the utter horror of watching his scan and seeing the large tumour in his brain. My legs wobbled. I wasn’t supposed to be in the CT room because today I was a patient’s wife and not a doctor, but no-one thought to stop me. I still think that was one of the worst moments – the moment the world ended.

“Are there any gremlins in my brain?” he asked. “Yes darling, there is a gremlin”.

Like most people, we had a lot of hope. Morgan was young, he was strong, I was a doctor. Surely the 14-month prognosis was not for him.

He endured two operations on his brain, chemotherapy, radiation therapy, three experimental treatments and more chemotherapy before finally in January 2016 we decided to stop most treatments and concentrate on what little time we had left.

By this time my gorgeous husband was struggling. He had lost half his vision, he couldn’t use the right side of his body, his face was swollen from steroids and he was very tired. It never occurred to me that I wouldn’t look after him. I began to prepare for caring for him at home.

I was lucky to have some knowledge of what caring for someone who is dying might entail, but whatever I knew as a doctor was a fraction of the real experience. I prepared though. I read blogs written by other women who had cared for their husbands through brain cancer. I researched the timeline, what might happen, how his death might be, what symptoms may occur. I tried to predict.

I learned that we continue to hope, even when things are deteriorating. So even if we only get a “good hour” we hope for another later or tomorrow. We learn to reduce our expectations, such that a smile or a squeeze of the hand seems like a victory and the promise of recovery. Therefore in order to prepare, you must force yourself to remember what happened yesterday and last week. When there are more bad days or bad hours than good ones, you know it’s time to make arrangements.

The hardest thing was doing this whilst still trying to keep up Morgan’s spirits (not that he needed much help; he was extremely positive right until the end). I tried to be open with him, but he looked a little hurt when I had the hospital bed delivered. I felt I had let him down a little, but he was struggling to sit up and I was finding it difficult to lift him.

The bed came just in time. A few days later he was unconscious and although he woke up, he never spoke or left his bed again until after his death three weeks later.

You need equipment if you are to care for someone at home. I needed a bed, a wheelchair, a commode, a bath board and later continence aids, pads, eucalyptus oil, face-washers, medications, liquid thickeners and bed shampoo caps. Most things were rented. I bought consumables from disability companies and the palliative care nurses provided some.

Mostly I needed strength, love and support from family and friends – they believed I could do it and the thought of giving him up to someone else’s care frightened me more than caring for him myself.

I decided early that as much as I loved Morgan he didn’t belong to me, and he deserved to be surrounded by love as often as possible. So I declared an open house. I told everyone that they were welcome to visit at any time and without notice, but I also warned them that I would not be providing food or drink and that if the house was full or it was a bad time they may be asked politely to leave.

I also asked for two hours each day to be alone with Morgan. I put on nice music, burned a candle, bathed him, cuddled him and had some quiet time with him. This was precious time for me. Usually, he would smile at me, then fall asleep as I washed him. I put eucalyptus oil in hot water to freshen the air and massaged lavender oil into his temples to soothe him.

It was during this three weeks that I began to think about “after”. His death had now become a real inevitability; he had stopped talking, eating and swallowing, and he slept more often than not. It felt awfully disloyal to start planning his funeral before his death but I was desperate to do something that honoured him and I knew that every funeral I had been to so far would fall short of his expectations. I had little to go on. He did not want to talk about it. He did not want to be cremated, he wanted to be buried somewhere “with trees” – not a manicured cemetery, and without religion.

I knew I wanted to care for him until the last minute – I never wanted to let him go – but I had no idea what was possible. My experience of death so far had been as a doctor working in a hospital and try as we might it is a cold environment, people are rushed through the death of a loved one and bodies are moved quickly to morgues.

I stumbled on home death care. I was looking at local funeral directors and I felt empty – they all seemed so cold, so scripted, the coffin so pointless. I had no idea what to do. By chance, I found a wicker coffin on an Australian site and I thought it looked beautiful, natural, easily degradable and strangely, comfortable. I looked for the local retailer and found Natural Grace holistic funeral directors. It was as if Natural Grace was made for us.

I watched an interview with managing director Libby Moloney and instantly felt that she was special. Libby specialised in home death care and I knew I wanted to keep Morgan’s body at home. She knew a natural burial site which was 10 minutes away from where we were married. It seemed perfect.

I called Libby, speaking softly and feeling awful guilt as I sat in the same room as my sleeping and alive husband. She was incredibly compassionate. She seemed to understand my hesitation and confusion. She was supportive and never pushed.

I crawled into bed with Morgan on the night of Easter Sunday. I knew this was it. I put my arms around him and a few hours later he took a final breath. It broke my heart.

Libby told me that when he died I should feel free to spend some time with him before calling her. I cuddled him and cried. I called his family and they came we spent a few hours together until 4 am, toasting him with single malt whisky and sobbing together. I called Libby and the palliative care nurses in the morning but asked everyone to leave me alone with him until noon. I wanted to wash and dress him and I wanted to do this alone.

Libby came to the house. It was the first time we had met and she was wonderful. The first thing she said was how beautiful Morgan was and then she asked if she could touch him. I was so grateful for that.

She showed me how to set up the cooling blanket then she talked me through what to expect and watch for. She was honest and very frank which I appreciated. We talked about fluids and smell and flies and all those horrible things that could potentially occur but didn’t. Then she suggested I take some locks of his hair.

She offered to do all these things for or with me but was sensitive to the fact I wanted to do it myself. I knew I had made the right decision; had an undertaker come to take Morgan away from me at that moment I think I would have screamed. The pain of his loss was unbearable and I needed a little more time.

I decided that the first day would be for family only, the following for friends and family. I made and received various calls. I warned everyone “Morgan is still here, he looks peaceful”. I told them not to come for my sake but that if they wanted to come and say goodbye they would be most welcome.

I had warned his family that I intended to keep him at home. They were very supportive but understandably surprised. They all visited and sat with us, and I think they appreciated it. On the second day, his brother decided it was time for him to say goodbye. “I won’t be back tomorrow,” he said.

Friends were varied in their response. I found that women wanted to come, but men were less sure. Most people seemed glad for the opportunity to say goodbye. Some wanted a few minutes alone with him (this was hard for me but I did it). Some tried to ignore his presence and just talked to me. I continued to sleep on the sofa beside him.

On the third day, I realised I had to let him go. I had sat by his side for a month. I hadn’t stepped outside or seen the sun, I had barely eaten and barely slept. I needed to visit the cemetery, pick out a burial site and organise the funeral. I needed to leave the house but I couldn’t leave his side.

Now when I looked at Morgan I could see he wasn’t there anymore; whatever he had been had left. I called Libby. She came, I helped, and everything was done with the tenderest care. I had arranged a wedding photo, an autumn leaf and a teddy on his chest in his hands and she asked about them so she could recreate it perfectly in the sanctuary at Natural Grace. It was terribly hard but I was glad I felt able to trust Libby to look after him.

I went to the cemetery to pick a site with Morgan’s sister. We didn’t speak about it but we both picked exactly the same spot, under a beautiful Candlebark tree. We went back to Natural Grace and I checked on Morgan. He was there in the sanctuary, looking just as undisturbed and peaceful, the items arranged just so. Then we discussed the funeral and Libby was open to everything we wanted or suggested. I asked if we could bring him to the funeral ourselves in his 1974 Bedford van (the Beast); “A wonderful idea!” she giggled. She recommended a celebrant. We wanted mulled wine served – “No problem”. I wanted guests to be able to tie messages and flowers into the casket – “Easy”. We would like Morgan’s father to play his pipes – “Lovely”.

On 1st April 2016, we buried my beautiful husband. We met at Natural Grace and I spent the morning sitting with him, holding his hand. I had picked flowers to place in the coffin with him. His family and I placed him gently into his wicker basket coffin. We arranged flowers around him. We placed him in his van. We said goodbye.

We held the service at the cemetery with 300 mourners. Libby looked after me, making sure someone gave me food and drink, and guiding me through the funeral, sometimes physically. She did not rush me, even though the service went much longer than anyone anticipated. Afterwards, at the wake, there must have been 100 people who told me how beautiful it was, and how “Morgan” it was. No-one had been to a similar funeral and they were amazed.

The decision to care for my husband at home before, during and after his death was simple for me but would have been all the harder, perhaps impossible, without the kind, attentive, professional support of Libby, and the loving acceptance of my and Morgan’s family. They allowed me to make these decisions and held my hand throughout this most devastating time. For this, I am eternally grateful to them.

Complete Article HERE!

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Till the last good day: 3 pillars of palliative care

Every dying pet deserves a plan. Consider these inspiring case studies and tips that illustrate the power you have in veterinary medicine to help pets live longer—with a better quality of life—for days, week or months on their path to a peaceful death.

By Robin Downing, DVM

[S]oft, gray muzzles. Opaque eyes, still filled with the warmth that sparks memories of their spritely puppyhood (or kittenhood). Your sweet senior patients still have the hearts of the joyful youths who once bounded into the exam room with wet, sloppy kisses and bright eyes. But as their bodies have changed, their needs have too.

It’s true that pets are living longer—into their teens and even 20s—and better than ever, thanks to the efforts of our veterinary healthcare teams. And the evolving preventive-care practices that help them live longer mean these pets may face serious illnesses at the end of their lives: end-stage chronic kidney disease, chronic congestive heart failure and cancer—currently the leading cause of nonaccidental pet death.

Instead of the sudden hit-by-car deaths, we now see slow, steady declines into the end of life. This monumental change in pet life expectancy demands a change in how we manage aging patients. We must prepare for the patient’s end of life long before it arrives, thinking through how we will address the special needs of these special patients.

Fortunately, the recently crafted 2016 End-of-Life Care Guidelines from AAHA and the International Association for Animal Hospice and Palliative Care provide a roadmap for teams to follow.

Pillar No. 1: You’re caring for pets and people

End-of-life care constitutes a critical stage in a pet’s life, and the compassion and decision-making that happens is at least as important as the accumulated lifetime of care before. Our collaborative relationship with clients takes on a new dimension and urgency in the face of the pet’s changing medical needs as well as the pet owners’ anticipatory grief (read about that here) and other powerful emotions.

Pet palliative and end-of-life care focuses on alleviating patient discomfort and controlling clinical signs while addressing the client’s emotional, social and spiritual needs. When we care for these patients, our fundamental concerns are pain management, hygiene, nutrition, mobility and safety in the home. The next tier of care focuses on the pet’s mental state and engagement with human family members as well as interactions with other household pets. Finally, the veterinary team needs to help clients appreciate the pet’s will to live and to participate in its own care—for example, its willingness to take pain-relieving medications or to be handled for wound care.

Pillar No. 2: You’re helping craft end-of-life care plans

The success of a palliative-care plan hinges on the same principles as any other care plan. The difference: the palliative-care patient meets one or more of these criteria:

  • The pet has been diagnosed with a life-limiting disease
  • The client has declined curative treatment
  • Curative treatment has failed
  • The pet’s quality of life is harmed by clinical signs of chronic degenerative disease
  • The pet is experiencing progressive illness with complications.

These are pets with special needs, and their care plans will reflect elements not typically included in the care plans we create for other patients. An integrated approach to end-of-life care addresses the pet’s needs and the client’s needs, including financial realities. (Check out “Needs care, no $$” for more on talking through financial limitations.) This requires open communication to foster collaboration between your team and your clients. Any end-of-life care plan will fail miserably if the client is unable (or unwilling) to execute it. All care plans must also consider the pet’s willingness to participate in its own care. We can’t create a care plan that the pet resents enough that it damages the precious family-pet relationship.

The needs of pets reaching the end of their lives change over time, so keep an open mind about how a care plan will evolve. Only by scheduling regular patient reassessments and revising the care plan can we continue to provide the care pets need and deserve.

Pillar No. 3: You’re checking in on patients—even at home

In today’s world of high tech and social media, clients are comfortable operating in the virtual world. It’s now a practical option to remotely monitor dogs and cats approaching the end of their lives. While many canine patients enjoy car rides, as they age and become infirm, travel may become challenging for them. Entering and exiting the vehicle may become difficult enough that very large dogs may become impossible to transport. Small dogs who are losing their sight or hearing may feel disoriented if removed from their home environment. And cats are notorious for resenting car transport, unless they are conditioned to it early in their lives.

Rather than adding more fear, anxiety and stress to the lives of pets and pet owners, it makes sense to create strategies for remote monitoring.

One strategy is for a trusted veterinary team member to make regularly scheduled house calls to evaluate the pet in its natural environment. This person can be a veterinarian (if needed) or a well-trained and experienced veterinary nurse. These reassessments should include a hands-on pain assessment as well as a meaningful dialogue with the client about how the pet’s doing. A veterinary nurse could take advantage of video streaming to interact in real time with the appropriate individual back at the practice to modify feeding, pain medication dosing and other aspects of the care plan.

And remember, using video in real time can connect clients and pets directly to the practice. The pet owner can ask questions and answer important questions from the veterinarian. These FaceTime or Skype calls or Google Hangouts are an opportunity to review medications and feeding. Best of all, a veterinarian can see firsthand the pet’s environment and movement through regular activities.

Your veterinary team is poised to offer comfort and care as the days fade and pets reach the sunset of their lives. So make a plan to offer these pets and their parents comfort and support until their last good day—and beyond. To learn more about how your team can offer support through the hospice and euthanasia process, see the dvm360 Leadership challenge: Pet pain and death.

Complete Article HERE!

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A personal look at assisted dying

Well-known Salmon Arm resident uses new legislation to end life

Sally Scales, who ended her life under the new Medical Assistance in Dying (MAiD) law, holds a photo of herself as a nurse in earlier years.

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“Hello. This is Sally Scales. S-c-a-l-e-s. I’m in Salmon Arm and I am preparing to die tomorrow,” said the message on the voice mail.

[T]he message was left overnight Monday, July 3 at the Salmon Arm Observer office.

Sally was one of the more than 400 British Columbians to use the Medical Assistance in Dying (MAiD) service since it became legal in Canada in June of 2016.

In her voice message, Sally said she was being blocked from using MAiD by her landlord because some tenants at Arbor Lodge seniors’ residence did not want it to happen there.

Her son Peter Scales telephoned the newspaper July 4 to explain his mother had been moved to Bastion Place care facility where the assisted dying would go ahead.

She died at 11:30 that morning, as scheduled.

Peter says his mother had been in favour of medical assistance in dying since 1993 when Canadian Sue Rodriguez, who was suffering from ALS – amyotrophic lateral sclerosis, or Lou Gehrig’s disease, took her legal battle for assisted suicide to the Supreme Court of Canada. Although she lost her case in a 5-4 decision, she took her own life in 1994 with the help of an anonymous physician.

Peter says his mom remembered when Rodriguez asked, ‘Whose body is this?’ “She said it’s my own body and I hope the law can change in time for me.”

He recalls that later Sally read an article by an oncologist who said he hoped to die at 75. As former owner of the Lakeshore News, Sally then wrote a column stating she’d like to die at 85. Peter says people around town, including some from her church, told her quietly of similar wishes.

“She knew she wasn’t alone in wanting to die at her own time and of her own choosing.”

Sally underwent open heart surgery 11 years ago, receiving a new valve and a quadruple bypass. At that time, “she said again and again that she was never going through that again.”

Peter said Sally watched both her brothers die and her mother die of heart attacks.

“She knew how the story was going to end.”

The new valve Sally got worked well for about 10 years, but then it wore out “through no fault of the medical profession.”

Although she was offered another valve, she refused.

“She was done. She was 79. She didn’t make it to her 85th.”

Her heart was operating at a maximum 20 per cent efficiency, so she was short of breath, ‘puffing’ and anxious a lot, Peter says.

“It would scare her as maybe this was the time she was going to die.”

As is required under the MAiD process, Sally filled out the application. She was assessed by a Salmon Arm doctor on June 23, says Peter. Then on June 28, a Revelstoke doctor assessed her in her room at Arbor Lodge. Later they agreed on a date of 11 a.m. July 4 to carry out MAiD in her room.

Peter says Sally was anxious about the paperwork.

“There was less than she probably imagined, but it’s certainly paperwork that needs to be done correctly. I think the whole MAiD community, the MAiD providers, are being appropriately extra careful. They don’t want to be seen as killing people, but rather ending suffering.”

Did Sally ever have second thoughts?

“No, that wasn’t her style. She didn’t have second thoughts about anything,” he smiles.

Peter says her family was supportive of her decision.

The only glitch was being informed on July 3 that she wouldn’t be permitted to die at Arbor Lodge, he says.

“She was so happy she could die in her home – which was Arbor – surrounded by her things.”

Peter sees the lodge’s decision as hurtful.

“It seemed like when we wanted to deal with just our mom and our grief, we had this needless logistical detail that seemed really cruel.”

A note to Sally from operations manager Christina Lutz stated, in part: “Respectfully, I do have to take into consideration the general feeling this sets about the house and the opinions of the other residents who live under this roof. Therefore, we will not allow this event to happen here and respectfully request that you find an alternate site.”

Peter says his family scrambled on a long weekend to change locations and Bastion Place was very helpful in accommodating them.

Lutz reiterated in a telephone interview that some residents didn’t like the plan.

“Sally was saying what was happening and the other people who lived here were not comfortable with it.”

Lutz said the lodge was happy to have Sally as a resident for nearly a year.

“She brought spice and laughter and good feelings to our home and we wish the family well.”

Sally’s three children – Peter, Richard and Linda, and three of her five grandchildren were present during her final hours.

He says a nurse and physician attended, the nurse inserting an intravenous (IV) line.

“She arrived and made sure that Sally was comfy and well-positioned on the bed. She stayed with Sally until the doctor was ready,” Peter says.

Peter and his niece then watched the doctor prepare the syringes, labelling them to have them in the right order.

When it was time to administer the drugs, Peter and his niece left the doctor and Sally alone in the room.

“My mom was an old nurse; she said only professionals…, the rest of you be somewhere else.”

He said Sally’s family was allowed to go in after 12 minutes.

Peter describes MAiD as compassionate and efficient.

“I am so glad it was available. I think we were all glad… We had watched mom suffer for far too long.”

He said Sally thanked all the staff, but also asked them their life stories.

“She was true to form, right to the last minute.”

Peter is a historian by occupation and one of his greatest personal interests is religion and beliefs.

“I think it’s a measure of a compassionate society,” he says of assisted dying. “It’s a tough moral quandary for each person and for society. Is it more compassionate to extend life or to end suffering? In Sally’s case she saw it as ending suffering, not ending life.”

Peter says he’s grateful his family could prepare for Sally’s death and spend time with her, knowing what was coming. On the practical side, he says it allows families to put papers in order, to learn important details such as where the will is located.

Interior Health provides statistics for B.C.

From the start of MAiD in June 2016 to May 31 this year, the BC Coroner’s Service has recorded 66 MAiD deaths in Interior Health and 435 in B.C. IH states it cannot provide numbers of individual communities because of small numbers and privacy concerns.

IH also states there is no designated location where MAiD can occur. To date in IH, it’s been provided in individual homes, in hospitals, in residential care facilities and in hospice locations.

“There may be times, given this is still a relatively new service in IH and in B.C., where there are challenges in accommodating MAiD in a specific location…,” wrote an IH spokesperson in an email. “In those cases, we would work with patients and families to find the best possible alternate location.”

Trailblazing was not new to Sally Scales. Peter recounts a favourite memory of his mom’s nursing career.

When she came to Salmon Arm from St. Paul’s Hospital in Vancouver, he says, she discovered that all the nurses were wearing skirts and starched caps, rather than the more practical pants the St. Paul’s nurses were wearing.

Peter says the administrator shouted at her. He referred to the nurses as “his girls” and said he liked them in the uniforms.

“That gave my mom her first crusade in Salmon Arm,” Peter says. “She hated being called a girl, especially by a hospital administrator. I think she might have taken it from a doctor.”

In speaking publicly about medically assisted dying, Peter hopes his mother’s story will help reduce the stigma about death and MAiD.

“They’re separate but interwoven. A lot of people have trouble talking, not necessarily about MAiD, but about death. It’s part of life and it’s inevitable.”

Complete Article HERE!

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First, Sex Ed. Then Death Ed.

By JESSICA NUTIK ZITTER

[F]IVE years ago, I taught sex education to my daughter Tessa’s class. Last week, I taught death education to my daughter Sasha’s class. In both cases, I didn’t really want to delegate the task. I wanted my daughters and the other children in the class to know about all of the tricky situations that might await them. I didn’t want anyone mincing words or using euphemisms. Also, there was no one else to do it. And in the case of death ed, no curriculum to do it with.

When Tessa heard I’d be teaching sex ed to her fellow seventh graders, she was mortified. My husband suggested she wear a paper bag over her head, whereupon she rolled her eyes and walked away. When the day arrived, she slunk to the back of the room, sat down at a desk and lowered her head behind her backpack.

As I started in, 13 girls watched me with trepidation. I knew I needed to bring in the words they were dreading right away, so that we could move on to the important stuff. “Penis and vagina,” I said, and there were nervous giggles. A pencil dropped to the floor. With the pressure released, I moved on to talking about contraception, saying no, saying yes, pregnancy, sexually transmitted diseases, even roofies. By the end of the hour, hands were held urgently in the air, and my daughter’s head had emerged from behind her backpack.

Sexual education programming was promoted by the National Education Association as far back as 1892 as a necessary part of a national education curriculum. As information spread and birth control became increasingly available, unwanted pregnancies dropped, and rates of S.T.D.s plummeted. In this case, knowledge really is power.

I believe that this is true of death, too.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.

Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.

I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed.

I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.

Every year in my I.C.U. I see dozens of young people at the bedsides of dying relatives. If we started to teach death ed in high school, a student visiting a dying grandparent might draw from the curriculum to ask a question that could shift the entire conversation. She might ask about a palliative care consultation, for example, or share important information about the patient’s preferences that she elicited during her course. High school, when students are getting their drivers’ licenses and considering organ donation, is the perfect time for this. Where else do we have the attention of our entire society?

Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.

And then we presented the material another way. We taught them how to play “Go Wish,” a card game designed to ease families into these difficult conversations in an entertaining way. We asked students to identify their most important preferences and values, both in life and as death might approach. We discussed strategies for communicating these preferences to a health care team and to their own families.

We were delighted by their response. It didn’t take them long to jump in. They talked openly about their own preferences around death. One teenager told another that she wanted to make sure she wasn’t a burden to her family. A third said he was looking forward to playing “Go Wish” with his grandfather, who recently had a health scare.

Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.

Complete Article HERE!

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The Gentler Symptoms of Dying

By SARA MANNING PESKIN, M.D.

The patient’s hair was styled with curls so stiff, they held her head a few inches up from her hospital pillow. She had painted her lips a shade of bright pink that exuded the confidence of age.

Just after her colon burst, she was still awake. She looked around, at me, at the monitors. She asked for pain medication. “Am I dying?” she asked.

“We think so,” I said, touching her manicured fingernails. “I am here with you.”

Later, she kept her eyes closed but opened them when we talked. It was a state that the author and hospice nurse Barbara Karnes described as “one foot in each world.”

“Can I do anything?” I asked.

“No, honey. I’m just tired.” She closed her eyes again.

Still later, she lapsed into a stupor. It was as if I wasn’t in the room at all, as if she’d gotten so close to death that she could no longer see the living world. With each hour, her lipstick appeared brighter as if in defiance as her blood pressure dropped and her skin whitened. Midmorning, she died.

While some of the symptoms of dying, like the death rattle, air hunger and terminal agitation, can cause alarm in witnesses, other symptoms are more gentle.

The human body’s most compassionate gift is the interdependence of its parts. As organs in the torso fail, the brain likewise shuts down. With the exception of the minority of people who suffer sudden death, the vast majority of us experience a slumberous slippage from life. We may be able to sense people at the bedside on a spiritual level, but we are not fully awake in the moments, and often hours, before we die.

Every major organ in the body — heart, lungs, liver, kidneys — has the capacity to shut off the brain. It’s a biological veto system.

When the heart stops pumping, blood pressure drops throughout the body. Like electricity on a city block, service goes out everywhere, including the brain.

When the liver or kidneys fail, toxic electrolytes and metabolites build up in the body and cloud awareness.

Failing lungs decrease oxygen and increase carbon dioxide in the blood, both of which slow cognitive function.

The mysterious exception is “terminal lucidity,” a term coined by the biologist Michael Nahm in 2009 to describe the brief state of clarity and energy that sometimes precedes death. Alexander Batthyány, another contemporary expert on dying, calls it “the light before the end of the tunnel.”

A 5-year-old boy in a coma for three weeks suddenly regains consciousness. He thanks his family for letting him go and tells them he’ll be dying soon. The next day, he does.

A 26-year-old woman with severe mental disabilities hasn’t spoken a word for years. Suddenly, she sings, “Where does the soul find its home, its peace? Peace, peace, heavenly peace!” The year is 1922. She sings for half an hour and then she passes away. The episode is witnessed by two prominent physicians and later recounted by them separately, at least five times, with identical descriptions.

Early reports of terminal lucidity date back to Hippocrates, Plutarch and Galen. Dr. Nahm collected 83 accounts of terminal lucidity written over 250 years, most of which were witnessed by medical professionals. Nearly 90 percent of cases happened within a week of death and almost half occurred on the final day of life.

Terminal lucidity occurred irrespective of ailment, in patients with tumors, strokes, dementia and psychiatric disorders. Dr. Nahm suggested the mechanism of terminal lucidity may differ from one disease to another. For example, severe weight loss in patients with brain tumors could cause the brain to shrink, yielding fleeting relief of pressure on the brain that might allow for clearer thinking. Yet this theory doesn’t explain terminal lucidity in people dying from dementia, kidney failure or other diseases. Like death itself, terminal lucidity retains a screen of mystery.

My grandfather talked to us for 10 minutes the day before he died. He hadn’t spoken coherently in days. His hands had become baby-like, grasping our fingers or the bed railing reflexively. The weight of his eyelids had become too heavy to lift.

Suddenly, he was back. “What’s the good word?” he asked, as if that day was the same as all the days before. He marched down the line of grandchildren at his bedside, asking for the latest news in our lives. He asked if they ever finished building the Waldorf Astoria in Jerusalem. He made a joke, one I can’t remember except for the way he smiled out of the right side of his mouth, tilted his head from side to side, and held up his hands in jest.

And then, again, he was gone.

Complete Article HERE!

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How to talk to children about death

It’s not an easy topic, but being prepared with some answers can help.

Children learn about death at the 2016 Death Faire in Pittsboro, North Carolina.

[W]hen I die, I want to be burned. I don’t want any worms in my brain.”

“Wouldn’t it be awful to be alive when the world blows up? Everyone would die. I mean everyone.”

“Daddy, what’s a UN air strike?”

The quotes above come directly from my two adorable daughters, now age 5 and 7. It’s fair to say that of all the subjects I have discussed with them, death is perhaps the most challenging — and the most rewarding. That’s because preparing our children to think about and understand death, dying and their own mortality may be one of the most important responsibilities we have.

After all, we’re all going to die. Even if that feels an awfully long way off for many of us, the chances are that children will be exposed to death sooner rather than later in one form or another. With preparation, exposure to death or dying can be a productive opportunity for growth. Without it, it can be a deeply traumatizing experience that reenforces some of our culture’s most negative traits.

A few years ago, Caitlin Doughty — creator of the popular Ask A Mortician series on YouTube — offered a somber and heartfelt plea for less death-phobic parenting following the tragic school shooting in Sandy Hook, Connecticut. Among the advice she offered (I paraphrase):

Ask children what they know: By first gauging a child’s thoughts on death — or on a particular incident involving death — we can get a better sense of their level of understanding and begin to identify the concerns or worries they may have.

Be honest: If we don’t know the answer to something, it’s not our responsibility (nor is it advisable) to make something up. Instead, we can simply explain that we don’t know, but that we’re here to help work it out.

Protect, but don’t shelter: Just because we’re ready to talk openly and frankly about death does not mean we can’t still protect our children. In fact, by being ready to answer questions and share our experiences, we are better able to both “filter” what information our children receive and give them some context and tools for processing ideas or news they are exposed to elsewhere. Doughty strongly recommends protecting children from news “death porn” (her term), especially following tragedies like Sandy Hook.

You can watch a good introductory video from Ask a Mortician below:

Family culture matters

As someone who grew up in a half-Finnish family (Finns have a notoriously morbid sense of humor), it had never occurred to me to shield my children from death or dying. That’s probably a good thing, as both my father and my father-in-law were diagnosed with terminal cancer when my children were 1 and 3.

What I learned during that challenging time reinforces what Doughty says: Children are resilient, curious and well-equipped to explore the topics of death and dying, long before they’re ready to fully understand it (if any of us ever do). In fact, the biggest parenting challenges we faced when we were going though difficult times was not how we talked to our children, but how we managed the different and often conflicting messages about death that they receive from different sources.

How, for example, should a parent explain why one family member says “grandpa’s in heaven” while another doesn’t believe that heaven exists? How do you prepare your children to deal with friends or family members who may be less willing to talk about these difficult topics? What do you tell children about talking to other kids about death? Or how do you prepare them for what kids might tell them?

Ultimately, there are no simple answers to any of these questions. After all, death remains both a challenge and a mystery for adults, too. But starting children on the journey to understanding early will give them the confidence and the curiosity they’ll need to confront mortality in a healthy, open-minded and compassionate way.

And as this second video proves, just know that when you talk to kids about death, things can get pretty dark:

Complete Article HERE!