The Amateur's Guide To Death & Dying
Enhancing Life Near Death
In this Oscar-nominated animated short, a young woman receives a mysterious package that contains a vinyl record. She soon realizes that she can go forward or backward in time by simply adjusting the position of the needle as the record plays on her stereo.
Tim Boon, RN is the CEO of Good Shepherd Community Care in Newton, MA. Share this poem with ALL the loved ones.
By Judith Matloff
Susan Linnee had not eaten for weeks by the time she entered a Minneapolis hospice on Oct. 5. A 75-year-old editor, she was dying of a brain tumor and as her body weakened, she grew confused and stuporous. But suddenly, 17 days later, she perked up and asked for what her brother, Paul, called “odd food”: dill pickles, liverwurst and seed bread. Relatives fetched the delicacies and she nibbled a few bites. More animated than in previous days, she engaged in lucid conversation. Soon thereafter, she slipped into a barely responsive state and died two weeks later.
In speaking with the medical team, her brother learned that the brief rebound his sister experienced was called an “end-of-life rally.” Palliative care experts say revivals are common, although no one knows exactly why.
“There’s great mystery around this,” said John Mastrojohn, the executive vice president of the National Hospice and Palliative Care Organization. “But everyone who works in the sector has a story.”
Anecdotally, doctors and nurses interviewed for this article said that a striking number of their dying patients had experienced a rally, also known as terminal lucidity. Bounce-backs generally last only a couple hours, but some go on for so long that the patients can take a break from a hospice for a few months.
Dr. Craig Blinderman, the director of adult palliative medicine at the Columbia University Medical Center, hears lots of accounts. Yet evidence-based data is elusive, if nonexistent, he said. Aside from the challenges of catching dying people at the moment of springing back, it’d be tough to get the medical ethics board to determine that the research would benefit the patient. This type of study would require constant drawing of blood and monitoring of patients, which runs counter to the quiet fade away that is a signature element of palliative care.
Dr. Blinderman has theories about causes, however. He postulated that as organs shut down, they can release a steroidlike compound that briefly rouses the body. In the specific case of brain tumors, swelling occurs in the confined space of the skull. The edema shrinks as hospice patients are weaned off food and drink, waking up the brain a bit.
These windows of energy can startle family members sitting at the bedside. Those who hold out hope that their loved ones may somehow recover may see the comebacks as encouraging. Some find the little flickers disturbing or even heartbreaking.
“I always provide a lot of anticipatory guidance, that you should not be surprised or alarmed or that it means that your loved one is healing,” Dr. Blinderman said. “Obviously you don’t want to dash hopes, but you have to make clear that Dad is not rising like Jesus Christ.”
Dr. Janet Bull dispenses the same advice, as chief medical officer at the Four Seasons Compassion for Life, a nonprofit hospice care organization in North Carolina. During her 18 years in the field, Dr. Bull has seen many rallies, but one in particular stands out.
“I had this one patient, he was demented for years, and then he said things near the end that blew away his mom,” she recalled with wonder. “He hadn’t had a meaningful conversation with her for 10 years.”
Physiologically, experts believe that the mind becomes more responsive when a hospice patient is taken off the extensive fluids and medications such as chemotherapy that have toxic effects. Stopping the overload restores the body to more of its natural balance, and the dying briefly become more like their old selves.
Mr. Mastrojohn speculates that the social support at a hospice can give the chronically ill more pep than in a sterile hospital where they’re hooked up to machines.
Then there’s a spiritual or psychological component, which defies scientific explanation. Hospice professionals note a compelling desire to say goodbye or bond with loved ones in those last moments. There’s no way to test this hypothesis, but there’s no way to falsify it, either.
“People know when they are dying. They have this internal gut feeling that tends to expand at the end of life, and they seek a strong final connection,” said Dr. Bull.
Other doctors nodded their heads when told about Ms. Linnee’s request for a last meal. They said that often ralliers will ask for a particular food associated with childhood or comfort. The request is generally explicit, say, a Diet Sprite rather than any old beverage.
Dr. Martha Twaddle cited the case of an Illinois woman in her 50s who was reaching end-stage heart failure. She had been barely reactive, but then sat up and asked for a hamburger famous in Skokie.
“It’s some enormous hamburger, the size of your face with all this stuff on it. She took two bites and then fell back asleep,” said Dr. Twaddle, a physician associated with the Northwestern Medical Group in Lake Forest, Ill., who has worked in palliative care since 1989.
She has had nonreactive patients jolt up to ask for a relative, or share final wishes before they die. “Sometimes they want to give instructions to the family, like, ‘Don’t forget to take care of the car.’ Something mundane but important to them.”
Palliative care experts suggest accommodating a loved one’s request, no matter how odd it may appear.
Dr. Charles Wellman, the longtime chief medical officer at the Hospice of the Western Reserve in Cleveland, has had patients who become alert only for the doctor. They will not talk for days, and then their eyes open when Dr. Wellman walks into the room. “I think they get tired and withdrawn,” he speculated. “They’re transitioning to another existence, and they have work to do on that. Maybe they get annoyed with family, but they might make an effort to respond to the doctor.”
But rallies frequently revolve around a relationship, particularly if the patient is waiting for a child to come from out of town to pay last respects.
“We had one patient whose son was in the military,” Dr. Twaddle said. “There was no way the son could get to her for a month. The woman was out of it during that time. He finally came. She responded, and then passed 15 minutes later.”
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by
Most people with dementia who lived at home and had a partner were sexually active, a national study of older adults found.
Of partnered people, 59% of men and 51% of women who screened positive for dementia were sexually active, including 41% who were 80 to 91 years old, reported Stacy Tessler Lindau, MD, of the University of Chicago, and co-authors in the Journal of the American Geriatrics Society.
This is the first study to establish nationally representative evidence about sexuality and cognitive function of older adults at home, Lindau said.
“Sexuality is an important aspect of life in aging, including for people with dementia,” she told MedPage Today. “We found that people with dementia, mild cognitive impairment, and no impairment share positive attitudes about sex and most said they were having sex less often than they would like.”
Untreated sexual dysfunction stops older people from deriving the full benefit of sex, Lindau added: “Our study shows that people with dementia, especially women, were not talking with their doctors about these problems.”
In this study, Lindau and colleagues analyzed data from 3,196 adults age 62 to 91 from the National Social Life, Health, and Aging Project, a longitudinal study conducted by personal interviews and leave-behind questionnaires that included spouses and cohabitating partners. They used an adapted Montreal Cognitive Assessment (MoCA) to classify participants into normal, mild cognitive impairment, and dementia categories.
Their analysis showed:
“Physicians need to balance the dignity and autonomy of the person with dementia who desires sex with the need to protect the person from harm,” said Lindau, who posted a blog with resources for clinicians seeking guidance about sexual consent. “Our study tells physicians that sexual activity is common among home-dwelling people with dementia and should not be ignored or dismissed as an important aspect of life with dementia.”
This study has several limitations, the authors noted: the reliability of survey responses may decline with worse cognitive function. People with signs of overt dementia that was evident to the study interviewers were excluded. The study centered mainly on male-female partnerships and does not yield insights about same-sex relationships.
Complete Article ↪HERE↩!
By Matt Pickles
Maths, science, history and death?
This could be a school timetable in a state in Australia, if a proposal by the Australian Medical Association Queensland is accepted.
They want young people to be made more familiar with talking about the end of life.
Doctors say that improvements in medicine and an ageing population mean that there are rising numbers of families facing difficult questions about their elderly relatives and how they will face their last days.
But too often young people in the West are not prepared for talking about such difficult decisions. There is a taboo around the subject and most deaths happen out of sight in hospitals.
Pupils might have reservations about lessons in death education.
But the Australian doctors argue that if the law and ethics around palliative care and euthanasia were taught in classrooms, it would make such issues less “traumatic” and help people to make better informed decisions.
Queensland GP Dr Richard Kidd says young people can find themselves having to make decisions about how relatives are treated in their dying days.
“I have seen people as young as 21 being thrust into the role of power of attorney,” he says.
Their lack of knowledge makes it a steep learning curve in “how to do things in a way that is in the best interests of their loved ones and complies with the law”, he says.
He says the taboo around death means that families usually avoid discussing until it is too late. Most people do not know how their relatives want to be treated if the worst happens.
“So we need to start preparing young people and getting them to have tough conversations with their loved ones,” he says.
“Death lessons” could include the legal aspects of what mental and physical capacity means, how to draw up a will and an advanced care plan, and the biological processes of dying and death.
These topics could be incorporated into existing subjects, such as biology, medicine, ethics and law.
Dr Kidd says education around death would help countries like Australia, the US and the UK follow the example of Mexico, where death is an important part of the culture and even celebrated in the Day of the Dead festival.
He gives the example of Ireland, where he says wakes held after a death can be “joyous occasions”.
Introducing a culture of openly discussing death could even change where we die, according to Dr Kidd.
The vast majority of Australians die in hospital, even though many people say they would rather die at home with their family around them.
“Only 15% of people die at home but in the case of many more people, they could have died at home rather than hospital if there had only been a bit of preparation,” says Dr Kidd.
A hundred years ago it was very normal for people to die at home. but modern medical technology allows life to be prolonged in hospital, even though the patient might not have great quality of life.
“People may decide that at a certain point they want to be able to die at home in comfort rather than being kept in hospital,” he says.
The proposal for lessons in death has now been put to the Queensland education authorities and Dr Kidd hopes the message reaches other parts of the world.
“Our main aim is to get young people to start having those conversations with their parents and grandparents to learn more about how they want to die so that they know the answer when they need that information in the future,” he says.
“It should be seen as a positive and proactive thing – information and knowledge can be really empowering to people.”
So perhaps this is something to bring up over your next family Sunday lunch.
It might not be an easy conversation but it could be a matter of life and death.
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The old man lies in the hospital bed, drawing his last, rattling breath as he fades away from life.
The film camera, positioned just next to him, keeps rolling. We see the nurses move him to another room before they gently clean his body.
“Nobody wants to die but it’s a natural thing, we are biologically determined to die,” says documentary maker Steven Eastwood.
His film, Island, lays bare the dying process by filming four people with terminal illnesses.
“Death is seen as a shameful thing – we think we’re a progressive society, but we repress and deny death,” Steven says.
“We’re no better than the Victorians.”
He was a quiet onlooker during the last year of his subjects’ lives, filming them in their homes before they became part of the daily rhythms of life in a hospice.
“To say you don’t want it to happen, you’re putting off facing something,” he says.
“We need better death awareness to be more familiar with our mortality. I don’t think that’s ghoulish.”
The documentary came about after Fabrica, a gallery in Brighton, commissioned a film about end of life.
The London-based film-maker’s proposal was accepted, and he managed to get access to film in a hospice on the Isle of Wight.
He speaks fondly of his time there, saying: “These are four people I really cared about – Alan, Roy, Mary and Jamie; three were in their 80s and one was in his 40s.”
Steven regularly made the five-hour journey to the hospice, including the boat trip to the island, which features in the slow, often hypnotic imagery of the documentary and its trailer.
He made the film after having “two quite significant bereavements – my mother-in-law and my best friend, who was the same age as me.
“So I realised I didn’t know very much about what palliative care is.”
Steven thinks we need to face the reality of death, make it part of our daily existence, so it’s less frightening.
“I think we all have an existential fear – ‘if I see someone I love who’s died, it’ll be too traumatic, it’ll replace all the images I have of them, I’ll never be able to unsee it, somehow it’ll hurt me’.
“But for me it isn’t the case, being with someone after dying, with that intimacy. I found it quite empowering and peaceful.”
He has huge admiration for the people who work in hospices, and hopes his film can “celebrate and show what palliative care is”.
“The most radical, extraordinary people in our society are the least visible,” he says.
“They’re the carers. And the care we receive at the end of our lives is extraordinary.
“These hospices which people have anxiety about going into – they’re not morbid, sterile spaces, they’re places of life.”
He says that after one of the screenings of Island, a stranger approached him, saying it had made him “less afraid of dying”.
Steven adds: “It’s not an ambition of mine, but if you can sit through the film and at the end feel uplifted, if you can make some kind of peace with something that will happen to all of us, then that’s a good thing.”
He speaks fondly about all his subjects, talking at length about Alan, whose death we see at the start of the film. Alan died of cancer.
“Alan had chain-smoked since he was 16 and he smoked in the hospice with a nurse lighting his cigarette. But he wasn’t dying of a smoking-related cancer.
“This is part of what palliative care is – helping someone smoke until they die.
“The doctors felt that if he hadn’t been smoking he would have died several weeks earlier – he was living to smoke.”
Alan invited him to film his last moments.
“The second time I met Alan, we had a connection, he said, ‘I think you’d like to stay with me all the way through and I think that would be great’.
“He wanted to do something radical with his death, he felt quite radical about his life.
“He believed our tissue is just a vehicle and we translate into something else.
“As far as he was concerned, there was no self-consciousness around his image, he thought participating was a way of marking something of his philosophy. He became my movie star, he was like my Burt Lancaster.”
Steven recalls watching Alan die.
“His death was a long, running out of breaths. It was very peaceful and very beautiful and I felt really moved by it. I didn’t feel sad. He was really ready to die.”
Alan told Steven he had seen a man die when he was just 19, during active service in the forces in North Africa. His commanding officer was shot, and died in his arms.
“He held this man and said, ‘I saw bliss in his eyes as he died, and I knew that what we are experiencing now is not it, there’s more’.
“So for him, his death was the thing he’d been waiting for. We can’t all ask for that.”
Steven acknowledges that of course deaths can be sudden or premature, such as Jamie’s.
“Jamie had stage 4 stomach cancer and had a young family, his attachment to his daughter was so incredible.
“He wanted to die in the best way he could with his daughter, so he involved her in everything, talked about his treatment, about what it was going to be like when he’s not there.
“He’s the person who I get upset thinking about.”
The film has been used to help medics in handling end of life care, and Steven and his producer are partnered with Sussex NHS trust.
“We’ve run two sessions with trainee doctors, to use the film as a means to talk about how we speak around death and dying, and how we talk to patients.”
He’s also keen to attract a young audience as he says people in their 20s are the “biggest death deniers”.
Steven talks about the pressure to be “productive, youthful, to look good”.
“This idea that we’re terminal and have an end is too much. I’ve spoken to young people who think about their late life and say, ‘oh I just want to take a pill to end it, when I’m no longer viable I switch myself off’.
“I do think it’s challenging to confront your own mortality.”
Steven, who also volunteers at his local hospice, thinks other cultures handle death better than we do, saying in Ireland “you see a more sustained grieving process and more familiarity being around the body”.
He also talks about Latin America and Asia, where they have “a completely different attitude towards the dying process”.
“I think we need better education – we are finite, our bodies do decay, and I’ve made my peace with that.
“I hope the film can return us to some extent to our biological bodies, and say yes, everybody will die, most people will die in this way, in their 70s or 80s from either heart disease or cancer, and the care will be extraordinary.
“I don’t find that a burdensome thought. I felt poorly informed, and now I feel better informed by making the film – I hope that it will do that for people.
“We die and we don’t have to turn it into some kind of sanctum, it’s life. And I think Alan showed me that, so yeah, I was very, very fortunate to be invited to film him.”
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Death for patients in U.S. intensive care units may look a lot different for people with limited English proficiency than for native speakers, a large study suggests.
About 8.5 percent of U.S. adults don’t speak English as their primary language, researchers note in Mayo Clinic Proceedings. While communication is crucial for decision-making at the end of life, it’s not been clear how language skills might influence the type of care dying patients receive.
For the current study, researchers examined data on 27,523 patients admitted to intensive care units (ICUs) in a large academic hospital over a three-year period. The total included 779 people, or about 3 percent, with limited English proficiency.
Death rates in the ICUs were the same no matter what language patients spoke most fluently, averaging 2.8 percent for both native speakers and those with limited English proficiency.
But among patients who died in the ICU, those with limited English proficiency were 62 percent less likely to have orders for comfort care before they died, and they took an average of 19 days longer to transition from active treatment to only measures designed to ease pain and suffering. Non-English speakers were also 26 percent more likely to be placed on breathing machines and 36 percent more likely to be put in restraints.
Patients with limited English proficiency were 38 percent less likely than native speakers to formally request what’s known as a do-not-resuscitate (DNR) order when they entered the ICU. A DNR tells hospital staff not to take measures to revive them if their heart stops working.
Non-English speakers were also 77 percent less likely to have an “advance directive,” a legal document that spells out what type of care patients want and who should make decisions on their behalf when they’re no longer able to communicate.
“This study shows that the end of life care that patients with limited English proficiency receive is different than for those who do not have language barrier,” said lead author Dr. Amelia Barwise of the Mayo Clinic in Rochester, Minnesota.
“This may be because more patients with limited English proficiency have an authentic desire to die with more aggressive medical therapies or that communication or other barriers prevent health care teams from optimally assessing and implementing a less aggressive approach for dying patients with limited English proficiency,” Barwise said by email.
The differences persisted even after the study team accounted for other factors that can independently impact care at the end of life like race, religion and age.
The study wasn’t a controlled experiment designed to prove how language abilities might directly impact care at the end of life. Another limitation is that it looked at a single hospital and might not reflect what happens elsewhere.
Even so, the findings resonate with other research suggesting that limited English skills can influence how patients are treated, said Dr. Gary Winzelberg, a researcher at the University of North Carolina at Chapel Hill who wasn’t involved in the study.
“Patients with limited English proficiency are less likely to have advance directives because these documents were not designed for patients with low health literacy or patients from diverse cultural backgrounds,” Winzelberg said by email.
Interpreters can help.
“Families should insist on having an interpreter present during family meetings and other communication during which patients’ condition and care options are discussed,” Winzelberg added. “If an interpreter cannot be physically present, there are alternatives including connecting to an interpreter by phone – families should not be asked to serve as interpreters.”
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