Talking with teens about death

Study finds that seriously ill young people want to discuss their care, wishes — Barbara Brotman

It is the hardest conversation a parent can imagine: talking to a critically ill child about the possibility of death.

But Deb Fuller, of Woodstock, wishes she had done it sooner.

By the time she and her husband broached the subject with their nearly 13-year-old daughter, Hope, her brain cancer was so advanced that she could barely speak.

Fuller asked Hope if she was afraid; if she was worried about how her parents and brother would cope when she was gone; if she was ready to go anyway.

Hope answered by squeezing her mother’s hand: Yes. Yes. And yes.

“That ended up being one of the best nights we had,” Fuller said. “We all sat around together to the wee hours of the morning and talked.

“But I waited too long. I thought we had more time,” she said.

Hope died within days.

“I wish she could have spoken to me,” she said. “I hate the thought that perhaps she laid there … and worried about it, unable to talk to me about it.”

End-of-life experts say that children should have the opportunity to discuss death in a developmentally appropriate way with a parent or a knowledgeable adult, though such conversations should not be forced.

And a recent study shows that many seriously ill children want to have that talk, and that both they and their parents are relieved afterward.

But parents often don’t know how to begin an end-of-life conversation with their children, said Maureen Lyon, associate research professor in pediatrics at Children’s National Medical Center in Washington and principal investigator at its Children’s Research Institute.

They are often afraid that talking about death will be harmful to the child, Lyon said. And by the time teenagers enter hospice or palliative care programs, which are adept at such conversations, the youths may be too ill to be able to talk or not want to at all.

But it can be a crucial conversation, Lyon said. Important decisions may have to be made, like whether to discontinue aggressive medical treatment or whether they would want to die at home or in a hospital.

Too often, no one — not even doctors — asks these questions of seriously ill teenagers themselves, she said. Without knowing their children’s wishes, families can be torn apart by conflict. And though youths under 18 have no legal standing to direct their medical care, Lyon said, their opinions should be heard.

She and Linda Briggs, associate director of the Respecting Choices program at Gunderson Health System in La Crosse, Wis., designed a way they can be.

They conducted a study in which they used facilitators to guide seriously ill young people and their families through conversations about end-of-life care — the same kind of conversations Respecting Choices offers to adults. At the end, the teens filled out advance directives outlining their wishes.

The study, which Lyon and Briggs presented at the annual conference of the International Society of Advance Care Planning and End of Life Care held recently in Rosemont, found that the youths wanted to be consulted, parents wanted to know their children’s thoughts and both teenagers and their families found the experience worthwhile.

Moreover, the conversations did not cause harm. The young people — who were between 14 and 21 and had either HIV or cancer — were no more anxious and depressed after they talked.

“The assumption is that these conversations will take away hope and raise anxiety. The reality is the opposite,” Briggs said.

Not that the conversations were entirely pain-free.

“The study was much harder on the teens with cancer,” Lyon said. A small percentage of those youths said they had found the talks hurtful. However, they also found them worthwhile. Lyon hypothesized that because they were more ill than the HIV-positive youths, the possibility of death was more real.

But Jessica Gaines, 22, who participated in the study as an 18-year-old who had been treated for Hodgkin lymphoma, said she was glad to be finally asked her opinion.

“When I was going through treatment, I was never asked, ‘Well, what happens if you don’t make it through?'” said Gaines, who lives outside Washington.

Parents were appreciative of the talks too. “I feel like a load was lifted,” one commented in a survey.

Some teens and families declined to participate. Hospices, too, find that not everyone wants to have such talks.

Jeremy Campus, 13, of the Northwest Side, is battling cancer that has recurred a third time. A patient at Hospice and Palliative Care of Northeastern Illinois, Jeremy is well aware of the gravity of his condition. His mother, Annmarie, has let him know that she is available to talk about anything, and his palliative care team is similarly open.

But when it comes to addressing the worst possibility, the quiet-voiced boy sitting at his family’s dining room table is clear.

“I don’t want to talk about it,” he said.

Some parents don’t want their children to talk about it.

“I was against, until the last breath of my son, for anybody to even to mention the word death to him,” said Alla Lyubyezny, of Buffalo Grove, whose son, Max Stine, died of brain cancer five years ago. He was 17 and a patient at Horizon Hospice and Palliative Care.

She didn’t want Max to lose hope, and considered it her duty to protect him from the pain of confronting death.

“Nobody needs to have this information, and to live their last, the month of time that is left to them, with that,” she said. “There are some subjects that are best left alone.”

But children generally know how sick they are, said Jennifer Misasi, head of Horizon’s pediatric program. They sometimes avoid talking about it to protect their parents, she said.

And there is no evidence that talking about impending death in a sensitive and appropriate way takes away children’s or parents’ hope or leaves them devastated, said Dr. David Steinhorn, medical director of the palliative care program at Chicago’s Lurie Children’s Hospital.

“Parents who have the opportunity to have frank conversations in a supportive, open way actually do much better and have fewer regrets when their child is dead than parents who do not talk about it,” he said.

“We’re not saying this should be imposed on anybody,” Lyon said. “But for those teens that want to have a voice, this works.”

“This isn’t about ‘Do you want CPR, yes or no,'” Briggs said. “It’s having them express their goals and values.

“How would you want your mom to make decisions for you? What would you want your mom to know about what kind of life makes sense to you, and what kind of life doesn’t make sense to you?”

Complete Article HERE!

PILGRIM AT TINKER CREEK

A READING FROM Pilgrim At Tinker Creek
BY Annie Dillard

I wonder how long it would take you to notice the regular recurrence of the seasons if you were the first person on earth. What would it be like to live in open-ended time broken only by days and nights? You could say, “it’s cold again; it was cold before,” but you couldn’t make the key connection and say “it was cold this time last year,” because the notion of “year” is precisely the one you lack. Assuming that you hadn’t yet noticed any orderly progression of heavenly bodies how long would you have to live on earth before you could feel with any assurance that any one particular long period of cold would, in fact, end? “While the earth remaineth, seedtime and harvest, and cold and heat, and summer and winter, and day and night shall not cease”: God makes this guarantee very early in Genesis to a people whose fears on this point had perhaps not been completely allayed.

It must have been fantastically important at the real beginnings of human culture, to conserve and relay this vital seasonal information, so that the people could anticipate dry or cold seasons, and not huddle on some November rock hoping pathetically that spring was just around the corner. We still very much stress the simple fact of four seasons to schoolchildren; even the most modern of modern teachers will still muster some seasonal chitchat and set the kids to making paper pumpkins or tulips for the walls.

But there is always unseasonable weather. What we think of the weather and behavior of life on the planet at any given season is really all a matter of statistical probabilities; at any given point, anything might happen. There is a bit of every season in each season. Green plants–diciduous green leaves– grow everywhere, all winter long, and small shoots come up pale and new in every season. Leaves die on the tree in May, turn brown, and fall into the creek. The calendar, the weather, and the behavior of wild creatures have the slimmest of connections. Everything overlaps smoothly for only a few weeks each season, and then it all tangles up again.

Time is the continuous loop, the snake skin with scales endlessly overlapping without beginning or end, or time is an ascending spiral if you will, like a child’s Slinky. Of course we have no idea which arc on the loop is our time, let alone where the loop itself is, so to speak, or down whose lofty flight of stairs the Slinky so uncannily walks.

Checklist approach to be tested in end-of-life care planning

Researchers from Harvard Medical School soon will begin testing a checklist-style approach to helping cancer patients get the kind of end-of-life care they want. The plans, detailed in June at a meeting of the International Society of Advance Care Planning and End of Life Care, are aimed at helping oncologists discuss end-of-life care issues with patients at an earlier stage in the disease process.

The trial of the serious illness communication checklist will involve 60 practicing oncologists and begin enrolling 450 patients in June. Data on patient and family satisfaction and treatment choices will be collected over three years, researchers said.

A wide body of research has found that patients who plan ahead are likelier to get the treatments they want as they near death. These patients tend to get less-aggressive care, earlier referral to hospice, are more satisfied with their care and see lower burdens placed on family members, experts say. Yet fewer than one in three Americans has a living will, and only half of U.S. patients with terminal illnesses have such directives documented in their medical records, according to the Agency for Healthcare Research and Quality.

Nearly 90% of patients with cancer have documented end-of-life care discussions with their physicians, said a study of about 2,200 patients in Los Angeles and Toronto published in the Feb. 7 Annals of Internal Medicine (ncbi.nlm.nih.gov/pubmed/22312140/). But most of the talks happened in the hospital less than five weeks before death and were with physicians other than the patient’s oncologist.

“I always think about this idea that it’s too early until it’s too late,” said Susan D. Block, MD, principal investigator of the serious illness communication checklist study. “In medicine, in general, these conversations take place way too late. There are lots of excuses on everybody’s side about that, but it needs to change.”

Oncologists participating in the trial will undergo a 2½-hour training session on how to use the checklist. They can have nurse practitioners join them for the training and help carry out the conversations with patients, which can take 25 to 40 minutes. The checklist asks patients who are estimated to have less than a year to live to discuss:

Their understanding of the prognosis.

  • How much information they want shared with loved ones.
  • Their goals of care, should their health seriously worsen.
  • Their biggest fears and what functional abilities they could not imagine living without.
  • How much medical intervention they are willing to undergo to gain more time.
  • How much they want family members to know about their priorities and wishes.

Talk focused on patient’s values
“We need to ask the right questions,” said Dr. Block, chair of the Dept. of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute in Boston. “Instead of focusing on procedures, we need to be focusing on goals, values, fears, quality of life, suffering and survival. Those are the things that matter to patients.”

The last step in the checklist is documentation, which integrates the patient’s answers — and any updates — into the electronic health record. The checklist has been piloted and fine-tuned during the last year, said Dr. Block, professor of psychiatry and medicine at Harvard Medical School. An abstract of her talk was published in the June issue of BMJ Supportive & Palliative Care (spcare.bmj.com/content/2/2/187.2.abstract).

Dr. Block was prompted to think about formulating the serious illness communication checklist by colleague Atul Gawande, MD, a professor of surgery at Harvard Medical School and author of The Checklist Manifesto: How to Get Things Right. Dr. Gawande, co-principal investigator of the study, had to overcome Dr. Block’s initial hesitation.

“I was very dubious,” she said in her presentation. “It seemed mechanical and reductionistic and cold to me, but I’ve warmed up to it. … I’m intrigued, in my mind, by this paradox — that something as routinized as a checklist could help with a conversation so deep and profound and complicated. It has some interesting potential, and we’re going to find out whether it works.”

Other presentations at the three-day conference focused on the challenges involved in advance care planning with racial and ethnic minorities, patients with disabilities and adolescents. Physicians, social workers, chaplains and other health professionals from Japan, Singapore, New Zealand, Australia and Canada presented information about end-of-life care planning initiatives in their countries.

Complete Article HERE!

Doctors hesitate to prolong their own lives to avoid pain

IT IS a common refrain from doctors doing the ward rounds in the intensive care unit of any major hospital: ”Please don’t ever let this happen to me.”

Most often the words are uttered at hand-over time when the day-shift doctors brief the evening-shift doctors at the foot of an elderly patient.

”He might be 80 years old, severe dementia, type two diabetes, previous strokes and a bit of renal failure, and now he’s fallen in the nursing home and suffered a head injury,” says Ken Hillman, professor of intensive care at the University of NSW, ”and the family wants him continued on life support hoping for a miracle.”
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There might be six specialists, eight junior doctors and when one finds the courage to say the words, ”We’ll all nod,” says Professor Hillman.

Professor Hillman believes many doctors would not put themselves through ”the same hell we often put other patients through”.

Professor Hillman is a speaker at a conference at NSW Parliament House next week on living well and dying well. The conference is organised by the non-profit organisation LifeCircle which helps people caring for loved ones at the end of their life. ”We support people having a good life right to the end with the conversations that will benefit the person dying and those they love,” said Brynnie Goodwill, the chief executive of LifeCircle.

With daily reports of miracle cures and medical breakthroughs, many people with advanced life-threatening cancers and other terminal illnesses pursue every possible treatment, no matter how gruelling, in the hope of extending life.

But do doctors choose the same path for themselves? The silence around doctors’ views was shattered earlier this year when Ken Murray, retired clinical assistant professor of family medicine at the University of Southern California, wrote in The Wall Street Journal that ”what’s unusual about [doctors] is not how much treatment they get … but how little.” He said doctors did not want to die any more than anyone else did. ”But they usually have talked about the limits of modern medicine with their families. They want to make sure that, when the time comes, no heroic measures are taken.”

Medical scepticism about life-saving interventions was revealed in a 1996 German poll where about half the specialists admitted they would not undergo the operations they recommended to their patients. A study last year, published in Archives of Internal Medicine, showed doctors often advised patients to opt for treatment they would not choose for themselves.

For example, asked to consider treatments for colon cancer, 38 per cent of doctors chose the option for themselves that had a low rate of side effects but higher risk of death (over an option with a high rate of side effects but lower risk of death). But only 24 per cent recommended this option for their patients.

Martin Tattersall, the professor of cancer medicine at the University of Sydney, said: ”I suspect very few doctors would opt for second or third line chemo therapy; my suspicion is that doctors are more likely to prescribe futile therapy than accept it. They’re aware of the statistics. The fact we’re not invincible is something doctors are reminded of every day of their practice and it probably slightly colours their attitude to fighting death as opposed to accepting it.”

Dr Rodney Syme, the author of A Good Death, said his father, a surgeon, when diagnosed with pancreatic cancer, refused surgery to relieve his jaundice even though he had performed the surgery on others many times. ”He didn’t believe there was enough merit in it,” Dr Syme said.

But Richard Chye, the director of palliative care at Sacred Heart, part of St Vincent’s Hospital, said doctors were distributed along the same spectrum as everyone else. ”I’ve known doctors to continue treatment right up until the end,” he said. ”It’s very much about their age group and attitude.”

Professor Hillman said 70 per cent of Australians said they wanted to die at home but 70 per cent died in hospitals.

Complete Article HERE!

Watch ‘Dying to Know’

‘Dying to Know’, a drama about the difficulties and benefits of talking about end of life wishes, received a rapturous and emotional reception at the Cannes Film Festival today (Friday 25 May).

The 30-minute film, which was selected for the short films category at the Palais des Festivals, was produced and directed for Dying Matters by pFlix Films. Leon Ancliffe, managing director of pFlix Films, said: “We could have filled the room twice over. It was jammed, with people sitting on the floor. It was brilliantly received. There wasn’t a dry eye in the house. It’s overwhelming how well it went down.”

‘Dying to Know’, which aims to prompt conversations about death and dying, was commissioned by Dying Matters in partnership with Earl Mountbatten Hospice on the Isle of Wight. It began life as a theatre play, written by Helen Reading, director of the Red Tie Theatre on the Isle of Wight, and was turned into a film starring the original cast following a successful UK tour.

Leon said: “The actors and actresses from the original play pulled out all the stops and took to the screen with ease, giving brilliant performances. The script is heart-rending, uncovering the raw emotions and difficult conversations that encompass an impending bereavement, with humour, tact and grace.”

“We’re extremely proud of this opportunity to encourage more people to talk about death, dying and bereavement and hope that the film can go some small way to easing what can be an extremely difficult time.”

‘Dying to Know’ was filmed entirely on location in the Isle of Wight and featured many local residents as extras. A trailer of the film was shown at the Dying Matters Awareness Week launch event earlier this year before its world première on the island in April.

Complete Article HERE!