Khamis, 17 Oktober 2013

The Star Online: Lifestyle: Health

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The Star Online: Lifestyle: Health

Living well to the end


World Hospice and Palliative Care Day was observed on Oct 12. Its aim is to spread awareness that talking about death makes living till the end easier.

WHY don't people think about or talk about their own death?" an eloquent, expressive former TV-producer-turned-housewife Shin Na asked in her blog.

"When I talk about it, people say I'm being morbid or pessimistic because I have cancer.

"Not so. I used to think about my death even before my cancer diagnosis. I don't dwell on it or get consumed by it, but I think it's something worth thinking about. After all, we're all going to die someday. Don't people have any curiosity about what it feels like to die?" she mused.

Shin Na, who lived in Singapore, was 42 when she left her family and loved ones on Jan 27, 2009. But her willingness to share her experience of living until the day she died has had an impact on Singaporeans – they are now opening up more to the subject of death and dying.

"I wish I could talk about it with friends or family without being accused of pessimism. I may indeed live to a ripe old age, but then again, I may not. But my chances are not 50/50. They're weighed against me such that it's completely reasonable for me to think and be curious about the most likely scenario.

"I think this falls under one of those topics that cancer patients can only talk to other cancer patients about. People outside the 'cancer world' can't really imagine this part of the cancer experience," she wrote in a post titled, "Why is Death so Taboo?"

According to a survey in the country in 2009, more than 60% of 800 people interviewed were comfortable with discussing their own deaths. However, when it comes to taking about death with someone else who is terminally ill, about 60% were reluctant to broach the subject.

In Malaysia, the numbers are scant.

Hospis Malaysia, one of Malaysia's largest hospices in terms of the number of patients it accepts each year, could only note that more than half of the patients referred to them come too late and most of them pass away within a month of referral.

"One of the most common myths Malaysians have about palliative care is that it means giving up and dying, morphine addiction, and a service for the poor who cannot afford medical care," says Hospis Malaysia's Chief Executive Officer and Medical Director, Dr Ednin Hamzah.

"Even for doctors, the dilemma is often the perception that if they recommend palliative care, they are giving up efforts to cure their patients of life-threatening illness," he adds.

These are some of the major myths that the World Hospice and Palliative Care Day seeks to dispel in this year's campaign.

Breaking the silence

One of the most important messages is that hospice or palliative care is not only offered to old people who are nearing the last days of their lives.

Anyone who is facing a life-limiting illness – be it cancer, heart or kidney failure, motor neurone disease, or chronic lung and liver disease – can be referred to a hospice for palliative care. Young children who suffer from these conditions can be offered such services too.

Those who are referred can continue to receive treatment for their diseases, and palliative care doctors and nurses are there to help them reduce their physical and emotional discomfort, as well as provide support to their caregivers.

Most often, hospice teams consist of doctors and nurses who are trained in providing medical care to ease patients' pain and discomfort, as well as counselors and volunteers who provide emotional support to the patient.

Sometimes, the teams also function as a neutral bridge between patients and their caregivers to help them prepare for the inevitable.

In Singapore, advance care planning facilitators are available for patients to voice their healthcare decisions before they lose the ability to do so.

Simple questions like, "Will I want to have a tube down my throat to keep me nourished when I can't express what I want?" can be put forward, and such questions, if communicated to the patient's loved ones, could relieve caregivers of the stress of having to make that decision should the time come.

Other non-medical matters, such as the writing of a will, a memoir, a digital photo collection of memories, could also be discussed with a hospice team.

"We are working on a project to allow our patients to tell their stories through a journal or memoir," says Hospis Malaysia General Manager, Tham Su Ming.

"We realise that some of our patients want to share their stories with their loved ones – a way of leaving behind a legacy," she explains.

"Hopefully, our patients would be more open with sharing their stories with the public in the future," says Tham.

Comfort, cost and closure

As the benefits offered by palliative care are not curative by nature, it is often overlooked, even in the medical community.

In 2010, a study published in the New England Journal of Medicine revealed that out of 151 patients with metastatic non-small-cell lung cancer (lung cancer that has spread beyond the lungs), patients assigned to early palliative care had a better quality of life than patients assigned to standard care.

Even more surprising was the finding that although fewer patients who receive early palliative care received aggressive end-of-life care (such as chemotherapy), most patients in that group lived 2.7 months longer.

American Cancer Society (ACS) Deputy Chief Medical Officer Dr J. Leonard Lichtenfeld noted in his comment on the study that, "If that degree of improvement in life expectancy was seen in a clinical trial looking at survival after treatment with a new chemotherapy drug, there would be applause all over the place.

"Instead, I fear that many physicians will just yawn and say something to the effect of, 'Here they go again with that pain stuff,'" he wrote on his ACS website cancer blog.

However, he reminded physicians and oncologists, "Maybe it's time to realise that with all of our powerful medicines and other treatments, we still have one medicine that we don't utilise often enough, and that is genuine caring and support for someone in distress," he says.

In the words of Dame Cicely Saunders, a nurse, physician and writer, and founder of the modern hospice movement, "You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die."

Heart-stopping event


Nurse practitioner champions a new model of mind-based rehabilitation.

SHE sometimes refers to her death, euphemistically, as "The Event".

She speaks of it matter-of-factly, almost clinically, devoid of freighted emotion one might expect from a woman whose heart stopped for 22 minutes one afternoon 23 years ago on the deck of a Sacramento, California, swimming pool, and whose resuscitation and arduous rehabilitation changed her life in so many ways.

Then again, Joyce Mikal-Flynn hardly qualifies as typical.

Even before the 1990 heart attack that has defined her life and given her renewed purpose, she had been a classic outlier. Driven and intense, Mikal-Flynn was a nurse practitioner with a thriving practice, a triathlete, a doting young mother of three, and spouse to a high-profile corporate husband.

She neither had the time nor inclination to wallow in maudlin emotions.

Post-"Event", she eventually used her inner-Ironwoman will to defy the odds – and most doctors' expectations – to rebuild her life, synapse by firing synapse, step by halting step, thought by positive thought.

She arrived, ultimately, at a higher existential plane where her "new-normal" life is richer and fuller than before.

Not only is she back practising her profession – as well as teaching nursing as a tenured professor at California State University, Sacramento – and running marathons and sending her three children off into adulthood, Mikal-Flynn has developed a new approach to rehabilitation.

Based on her experience and those of other survivors of life-altering accidents or illnesses, her concept of "metahabilitation" promises nothing less than turning "devastation and disempowerment into self-actualisation".

Her self-published book, Turning Tragedy into Triumph, details her story and those of six others who, due to accident or illness, saw their worlds come crashing down – careers and marriages ended, senses of identity obliterated, once-ordinary daily routines turned monumentally difficult – but refused to succumb.

Using her medical background to buttress her personal experience, Mikal-Flynn has sought in the book to teach doctors and occupational therapists that rehabilitation alone is not enough, that a psychic transformation can go hand-in-hand with levels of physical recovery.

"The thing that drives me crazy is physicians and other healthcare people taking away that sense of hope. Who knows what you're going to do, post-accident?

"I don't know. You have to instill hope. There's a hope of your life being a wonderful life. Sometimes, these people that I wrote about hung onto the thinnest thread of that hope. And look where it got them – to huge growth experiences," said Mikal-Flynn.

Of course, Mikal-Flynn, 58, concedes that her story is atypical. One of her cardiologists, Dr Roger Van Winkle, once told her, "You are the luckiest person I have ever met. I have never met anyone who had that much CPR and is alive and sitting up speaking to me."

But rather than considering herself an exception among near-death cohorts, Mikal-Flynn sees her ordeal as an example of how she forced herself to "shake off my ego and resentment, and move forward".

When asked how, as she writes, people can find meaning in their suffering, Mikal-Flynn leans in and puffs her lips to blow her brown bangs back into place.

"I do not minimise people's pain. These things are not fun and I'd never challenge somebody on it and (say), 'You just need to get over it.' No, no, no. But you need to grow as a result (of the event). Here's the deal: I'm so tired of motivation.

"People tell me, 'Joyce, your story's motivational,' but motivational stories are a dime a dozen. What I want to do is to say, '(My) story is just to allow you to see possibilities. Because just hearing a motivational story is not enough. If it was, everybody would be (cured). I never sit around telling somebody, 'This is the best thing that could happen to you.'"

But, in a way, it was for Mikal-Flynn. Two years after "The Event", through rigorous occupational therapy and counseling, she regained all her cognitive functions and proved wrong the cardiologist who told her she'd never run again.

Saddled with aphasia, she basically had to relearn the language and, as her husband, Terry, noted, "figure out how to run the microwave oven again."

She battled depression, too, once flirting with suicidal thoughts. She would, early on, take walks around the block and forget where home was.

Her kids were on their own when having to construct their fourth-grade projects; mum was just trying to remember their middle names.

So Mikal-Flynn, when she later returned to earn her doctorate at St Mary's College in Moraga, California, remembered her initial struggle and the "turning point", a moment of clarity when she decided to fight to embrace her new life rather than morosely accept its perceived limitations.

Much like Elizabeth Kubler-Ross' stages of death, Mikal-Flynn developed a six-stage model of rehabilitation: acute recovery; the turning point; the treatments; acceptance and adaptation, regeneration; and taking on the future. She even copyrighted the term "metahabilitation".

Meta, she said, because it goes above and beyond a simple return to normalcy that rehabilitation promises.

Then, she set out to interview others like her who had taken the same path after catastrophe. Among the six survivors profiled in the book are "Jerry", a dentist who was paralysed due to an air embolism while diving and lost his practice; "Dominic", a college rugby player paralysed in a car accident; and Connie, a mountain climber who suffered major head trauma in a 30-foot fall.

After varying periods of grieving the loss of much of their physical capabilities, the subjects whom Mikal-Flynn interviewed set about re-evaluating their lives in terms of not what they no longer could do, but what possible new opportunities arose as a result of their catastrophic accidents or illness.

"When I had my event, the thing that drove me nuts was everybody telling me what I could not do," she said. "Nobody said, 'OK, for (driven) people like you, here's what we'll do.'"

She acknowledges that her "metahabilitation" stance has drawn criticism from some doctors, who believe it gives some patients false hope, and from some patients who may think they are "failures" if they don't succeed in reaching a certain plane of consciousness.

But Dr Dean Elias, Mikal-Flynn's dissertation adviser at St Mary's, defended the research and concept of "metahabilitation". Her results may be anecdotal – but, my, what compelling anecdotes.

"All these people she talked to had a transformation of consciousness," Dr Elias said. "They became different in a way that was more participatory in the whole of life. They gained a sense of their own agency. I think the medical establishment is doing what it gets paid to do, which is to keep things normal. She has discovered something that seems abnormal but in a very positive way." – The Sacramento Bee/McClatchy-Tribune Information Services


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