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Planning for death: Still not easy to talk about ‘taboo’ issue

Almost 10,000 have completed end-of-life arrangements through Advance Care Planning

Madam Amiron Jee

By Foo Jie Ying

[A] former nurse, she has seen her fair share of patients dragging out their final days on life support.

She is also a cancer patient. When she felt her body “going downhill” in late 2014, the Singapore General Hospital (SGH) volunteer, who had heard of Advance Care Planning (ACP) decided to find out more about about it.

She later completed her ACP with the SGH social service department.

The mother of three told The New Paper: “When I fell quite ill then, I was thinking, good thing I had this thing done. I informed my children (about my ACP).”

ACP is a series of conversations about one’s wish for care and treatment in the event of difficult medical situations, when one becomes too ill and is unable to make decisions for oneself.

It can be conducted informally between individuals and their loved ones at home using a workbook by the Agency for Integrated Care (AIC), or formally with trained facilitators present.

Close to 10,000 people have completed formal ACPs to date, since AIC rolled it out in 2011.

The Ministry of Health will reach out to 25,000 Singaporeans over the next four years, said Minister of State Chee Hong Tatlast month.

ACP will also be expanded to different care settings, like specialist outpatient clinics and in primary care, he said.

There is reluctance to talk about death because most people think a medical crisis will not happen to them, said Mr Mark Lin, who started the Good Death project to encourage early end-of-life planning.

The deputy director of Special Projects (Eldercare) at charity Montfort Care told TNP: “The idea of talking about planning for situations if anything happens to yourself can be quite a taboo.”

Madam Jee’s husband is one such example.

The couple had approached SGH’s social service department together, but unlike her, he refused to do an ACP because it is “pantang” (Malay for taboo).

But for Madam Jee, who battled breast cancer in 1998 and lung cancer in 2015, and was diagnosed with Stage 4 brain cancer last year, conversations about death are a matter of pragmatism.

“For me, I’m doing this partly for the sake of my children. I’m a cancer patient. For cancer patients in the terminal stage, it’s very hard to recover because the cancer cells are eating the body up.

“I don’t want my children to feel guilty for suggesting to let me go in peace instead of putting me on artificial nutrition to survive. It may sometimes stay with them, with them thinking ‘I shouldn’t have done that’,” she told TNP.

With her funeral arrangements made, the Muslim also does not have to worry about her three US-based children being unable to rush back in time for her burial, which must be done as soon as possible..

While it is still not easy to talk about end-of-life issues, AIC deputy chief executive Wong Kirk Chuan told TNP he hopes to overcome this by working with partners like the Singapore Hospice Council to raise awareness on these issues.

Instead of waiting for a medical crisis, Dr Wong encouraged early ACP conversations, which offer peace of mind.

Mr Lin, whose youngest clients include a 38-year-old couple, agreed. He said: “The whole point of the ACP is not what you put on the document, although it is a formal record of your wishes. It’s about the process of talking about such things.

“ACP is like a health booklet that follows you as you age. It’s something you have to keep updating.”

Complete Article HERE!

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Medical advancements have changed the way we die and view the process of death

The process of dying is a more complicated issue today because of advancements in life-sustaining technologies

“Due to innovations in medical technology, our perception of death has changed as we are more able to alter the natural path of the human life.”

By Yasmine Mian

[H]ow we die is a profoundly personal journey.

As college students, we don’t consider the topic of death frequently, let alone the process of dying. However, it is a universal theme that does not discriminate against anyone, no matter their age.

Throughout history, the process of dying is represented differently across cultures and religions. While some religions, like Buddhism and Hinduism believe it marks the beginning of rebirth or reincarnation after death, others, like Christianity, believe it marks the beginning of a journey to Heaven.

Regardless of the beliefs, to fully understand the process of dying and its aftermath, we must examine how the dying process has changed over time.

Throughout our history—particularly recently with medical advancements—the human race has looked far and wide to answer a complex question: What is a natural death? With so many life-sustaining technologies to potentially keep us alive indefinitely, many don’t know what a natural death entails anymore.

Universities like ASU offer courses exploring the cultural and religious aspects of death and dying. 

While the biological process of dying is universal, the behaviors associated with expressing grief are very much culturally bound. Courses like these offered at universities allow students to learn how cultures have developed ways to cope with the process of dying.

Sally Johnson, a professor of psychology at Glendale Community College, believes that all students should study the cross cultural aspects of death.

“By learning about the way different cultures and religions treat the dying process, we can gain more insight into how they deal with the heartache and pain that comes along with death and how it manifests itself in the funeral/death process,” she said. 

However, it is important to remember that the process of dying has drastically changed over the past several decades with the development of modern resuscitative technologies. It seems as if a “natural death” has no place in our society anymore.

The idea of a natural death is merely a reflection of the social and scientific context of the time that death took place in.

When we picture a natural death, we envision an individual lying in bed surrounded by loved ones, taking their last breaths in a place of comfort and homeliness, a sight of peace and tranquility often dreamed of in literature.

However, with the help of modern medicine and innovative technology, our perceptions of natural death have now changed.

Thanks to modern medicine, diseases like polio, scarlet fever and others have been rendered preventable, treatable, or far less common now. This has led to a dramatic extension of life.

However, these new technologies have also been used to prolong the life expectancy of individuals with terminal illnesses, such a cancer.

While the idea of prolonging life might sound like a good thing, it often forces patients, their loved ones and their doctors to make difficult, painful decisions.

In some cases, when patients have no hope of surviving, we use technology and drugs to simply keep them alive in a biological sense. 

Families and doctors may feel as though they need to exhaust every available treatment or medication to prolong the dying process, however, that can be a naive and selfish outlook. 

But what we don’t understand is that there is a difference between being alive and living. Medicine can’t cure everything, but we often act as though death is optional.

The dying process is usually centered around the elderly, who are approaching there last few months of life due to natural causes. When younger individuals do die, it’s usually the cause of an accident or life-threatening disease.

However, individuals of all ages, especially students should be aware of the cultural significance of death, especially as we begin to cope with the loss of loved ones or go into professions where death is common. 

We must recognize the limits of our human knowledge and technology and accept the fact that eventually, all of us will die. As morbid as it sounds, it is a natural process of life and should not be pegged as a taboo topic. 


 

Complete Article HERE!

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Sharing One’s End of Life Choices – via a Mobile Device

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[P]atients can now use their smartphones to share their wishes for end of life care — whether or not they want to be intubated or have CPR, for example — with ambulance crews, loved ones, emergency-room doctors and hospitals.

No more fumbling for a piece of paper, signed by the doctor, to show health-care providers when a terminally ill loved one is rushed to the hospital. Patients in New Jersey can have their wishes become part of their electronic medical record and shared on mobile devices.

The online version of the “Practitioner Orders for Life-Sustaining Treatment” was launched Friday, almost five years after New Jersey authorized the use of a paper form for frail and severely ill patients. The online version will be part of a registry maintained by the New Jersey Hospital Association, with strict safeguards for patient privacy.

“We’re moving beyond having a green paper hanging on the refrigerator,” said Health Commissioner Cathleen D. Bennett, speaking of the paper version of the POLST forms. When patients articulate their preferences, it helps them to live on their own terms at the end of life, she said.

They can also express their goals for care, ranging from a full attack on their disease to palliative or comfort care. The form is signed by both the patient and the doctor or advanced-practice nurse, and is considered a medical order. Emergency personnel can follow it whenever the patient can’t speak for himself.

Joseph Carr, NJ Hospital Association Chief Information Officer, demonstrates how the emPOLST can be accessed electronically and how it can help inform care.

“Through this tool, more health-care providers will have immediate access to critical information they need to treat the patient according to the patient’s health-care preference,” Bennett said. “Patients with smart phones also will be able to share their electronic POLST form with a new physician, specialist or emergency-room doctor.”

In New Jersey, about 11,000 patients a year created POLST forms at each of the hospitals that participated in a study of it, said Joseph A. Carr, chief information officer for the New Jersey Hospital Association, who demonstrated the electronic version.

At a ceremony at the Villa Marie Claire Hospice in Saddle River, Bennett and Betsy Ryan, president of the association, signed an agreement for the association to become the online repository for the POLST forms. The villa, a former convent, is an inpatient hospice for 20 patients that is part of Holy Name Medical Center.

Talking about the end-of-life is one of the most important conversations a family can have, said Michael Maron, president of the medical center. The hospice’s decade of work has taught him that patients feel comforted and empowered when they are able to communicate their choices clearly and effectively, and they are understood by caregivers and loved ones.

The POLST form is available from the Department of Health or the New Jersey Hospital Association. For more information, also see National POLST Paradigm.

Complete Article HERE!

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Five questions with end-of-life doctor

 
By Carmela Fragomeni

[A]merican palliative care doctor and end-of-life activist Bruce (B.J.) Miller was in Hamilton Thursday to talk about Life Before Death.

The free event was part of Hamilton Health Sciences’ new twice-a-year speakers’ series called GreatBigIdeas.

Miller has made it his life’s mission to improve end-of-life experiences for people and their families after an accident in his early 20s left him close to death and a triple amputee.

The Spectator spoke with Miller before his presentation.

Q — Why do you say you have a formal relationship with death?

A — I’ve come close enough to acknowledge it and by acknowledging death, it begins a relationship. You begin to relate to “nothing lasts forever”…I can comment on what it’s like to lose because of my own injuries…We can’t control everything — I chose to keep that in mind as I traverse the day. It helps me live more fully and appreciate what I have while I still have it…Loss is hard. It also proves how precious life is in the first place, which encourages us to enjoy it while we have it.

Q — Why does the health system not serve the dying very well?

A — By choosing to wage war on disease, we end up feeling like losers when we’re not curable and when we die. It’s a shaming…The system does incredible work on cures. But it abandons the people who are no longer fixable. This adds an extra layer of sadness that is unnecessary.

A — How can we make dying a better experience for all of us?

Acknowledging it and pulling it out of the closet …normalizing it, I think that would help…Stop dividing medical issues from social issues…I worry about all the wisdom that languishes in nursing homes. I worry that no one listens.

Q — You say you don’t have to be dying to benefit from palliative care. What do you mean?

A — Everyone conflates palliative care with end of life…Palliative care is about timing in the face of illness and quality of life. It includes end of life but is not focused on it. Hospice is devoted to the end…Palliative care is not running away from death but not focusing on it either.

Q — How can someone live well when facing imminent death?

Well, that process begins before (facing death). If you crafted a world view that includes death, you won’t be surprised when your time comes. That way your persona can remain intact and you can stay whole to the end…even as your body crumbles. If you see death as an unnecessary force, you’ll find yourself at odds with yourself.

Complete Article HERE!

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We’re dying more at home. That’s good

[F]or many years now, pollsters have asked Americans where they would rather die, in home or in a hospital.

Once the initial shock of the question wears off (“Who said I was going to die in the first place? How dare you!”), most of us answer that we would prefer to die at home, in familiar settings, surrounded by loved ones. It makes sense.

Then, of course, most Americans go off and die in the hospital, in large part because they haven’t made their end-of-life wishes known to people who might have to make those decisions. (Or, in the alternative, because they haven’t thought that much about their end-of-life decisions in the first place.)

Oregon is an exception. And that’s a good thing.

recent article in The New England Journal of Medicine noted that nearly two-thirds of Oregonians who died in 2013 did so at home, as opposed to 39.6 percent of Americans. (The article relied on statistics from Medicare and defined “home” as wherever the person was living at the time of death.)

The article, by Dr. Susan W. Tolle, head of the Center for Ethics at Oregon Health & Science University, and Dr. Joan M. Teno of the University of Washington, had other good news for Oregon residents who might die someday:

  • The rate of intensive care unit use in the last 30 days of life in Oregon was 18.2 percent, as compared with 23 percent in Washington state and 28.5 percent in the rest of the United States.
  • Patients who were hospitalized in the last month of life were more likely to be discharged to their homes in Oregon (73.5 percent) than in Washington (63.5 percent) or in the rest of the United States (54.2 percent).

These numbers likely will not surprise anyone who’s followed Oregon’s efforts to lead the way in the tricky issue of end-of-life care. In their article, Tolle and Teno argue that one big step forward came in 1995, when Oregon created a POLST program.

POLST is an acronym for Physicans Orders for Life-Sustaining Treatment; the program essentially allows patients to document their preferences regarding the use of life-sustaining treatment. Ideally, medical providers have access to a patient’s POLST documents and abide by their instructions.

But just having a POLST program in place is not enough, the article notes: After all, Washington state has a similar program, but it trails Oregon in some of the metrics that Tolle and Teno were tracking.

The difference between the two states? At the risk of oversimplifying, a lot of it comes down to execution and follow-through.

In the decades since Oregon adopted the POLST program, the state has developed educational materials about it, organized conferences to spread the word, researched the issue and (perhaps most importantly) maintained a statewide registry of POLST participants. That electronic registry allows medical providers throughout the state to access it to check on a patient’s wishes at the end of life; that’s important because those patients may not always be able to speak for themselves.

Washington had a registry in place, but abandoned it because it wasn’t widely used.

Oregon’s POLST system isn’t perfect: For example, Tolle and Teno note that one-click access to the POLST form from a patient’s electronic medical records is not yet available in most hospitals. We need to keep measuring our progress and improving our systems.

Perhaps the best part of filling out the POLST forms is that it provides a starting point for conversations that are easy to put off. No one likes talking about death. But talking about it now might help ensure that we can die on our own terms.

Complete Article HERE!

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Atheists And Highly Religious People Least Afraid Of Death: Study

The thought of dying can be terrifying but some people are not afraid to die as much as others. Now, a new study shows how faith and religion may have something to do with a person’s likelihood to fear death.

By Allan Adamson

Atheists, People Who Are Very Religious Less Likely To Fear Death

[I]n a new study, which was published in the journal Religion, Brain and Behaviour, researchers found that people on far ends of the faith spectrum – namely atheists, who do not believe in the existence of a god, and the very religious – are least afraid of death.

For the study, researchers conducted a meta-analysis of earlier studies to get a closer look at the relationship that exists between religious belief and death anxiety.

Using about 100 articles published from the years 1961 to 2014 and which contain data involving 26,000 people from different parts of the globe, researchers found that people with higher religiosity levels have lower levels of anxiety toward death.

They also found out that the effect holds regardless of religious belief such as beliefs in afterlife and God, or religious behavior such as praying and attending religious services.

People at the far sides of the faith spectrum are least afraid of dying. Researchers found that atheists and people who are very religious are least scared of death.

The analysis likewise revealed that while people who are intrinsically religious have lower levels of anxiety for death, individuals who are extrinsically religious have higher levels of death anxiety.

Extrinsic religiosity is characterized by religious behavior that is motivated by practical reasons and considerations, which include the emotional or social benefits of being part of a religion. Intrinsic religiosity, on the other hand, is marked by religious behavior that is driven by true belief.

The findings though had mixed results across the studies. About 18 percent of the study showed that religious people tend to be more afraid of death compared with non-religious people and more than half of the studies did not show an association between religiosity and fear of death.

The mixed results hint that the association between death anxiety and religiosity may not be fixed and may differ depending on context. Because the studies were done in different parts of the globe with most of the research done in the United States and a small number conducted in East Asia and the Middle East, it is difficult to identify how the pattern differs from religion to religion or culture to culture.

Religiosity And Death Anxiety

Some researchers think that the relationship between religiosity and death anxiety follows an upside-down U pattern, which suggests that religious believers may have less anxiety toward death than individuals in between the far sides of the religious spectrum. Nearly 10 of the studies involved in the meta-analysis that were sufficiently robust for researchers to test the idea formed this pattern.

“This definitely complicates the old view, that religious people are less afraid of death than non-religious people,” said Jonathan Jong from Coventry University.

Jong said that it is possible that atheism offers comfort for death. It is also possible that those who have no fear of dying do not feel the need to seek religion.

Complete Article HERE!

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Learning to talk about death and dying should start early in doctors’ careers

By Junaid Nabi

[W]hen I started medical school, I fully expected to learn how the nervous system works, why heart attacks happen and what to do to stop them, and how the immune system sometimes turns against the body and causes autoimmune diseases. One of the things I needed to learn but didn’t was how to talk with people about death and dying.

To fill that gap, I enrolled in a course at Harvard Medical School on communication strategies during end-of-life care. It was designed to help budding physicians understand how spirituality, end-of-life care, and medicine interact. What I learned surprised me.

I found out that I wasn’t alone in feeling that I was ill-prepared for having effective end-of-life conversations. Physicians in general tend to be particularly limited in their ability to discuss issues such as how long patients will survive, what dying is like, or whether spirituality plays a role in their patients’ last moments.

At first glance, physicians’ poor understanding of death and the process of dying is baffling, since they are supposed to be custodians of health across the lifespan. Look deeper, though, and it may reflect less the attitudes of physicians themselves and more the system that nurtures them. After all, we train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death.

At one of the seminars that are part of the course, a young man was asked about how he felt during the final days of his mother’s struggle with cancer. “Pain is not suffering if it has a meaning; if it doesn’t, pain and suffering are the same thing,” he said.

That juxtaposition of pain and suffering struck me as an important reminder of the vital role physician communication plays from a patient’s point of view. I realized that a transparent communication strategy can ease suffering and make pain more bearable.

In the process of my coursework, I also realized that significant communication barriers exist between physicians and patients to discussing end-of-life care. When physicians aren’t trained about how to approach patients and their families regarding end-of-life decisions, it’s difficult, if not impossible, to provide the care they want and need.

In one survey, nearly half of the medical students and residents who responded reported being underprepared to address patient concerns and fears at the end of life. About the same percentage said that “dying patients were not considered good teaching cases.” In other words, patients on palliative care with no need of further interventions were seen as offering little in the way of imparting clinical knowledge — even though they might have been wonderful cases for learning more about death and dying.

It’s still unclear whether such limitations arise from personal difficulty talking about this sensitive topic, an inadequate medical curriculum, or a lack of training during residency on how to communicate with terminally ill patients.

When a robust rapport between patient and physician is lacking, or when a physician hasn’t taken enough time to lay out all the options, hospitals tend to follow the “standard” protocol: patients — often at the insistence of family members — are connected to several intravenous lines and an intubation tube, or put on life-support machines, all because the patient or the family never had a clear conversation with the medical team about the severity of the disease and its progression.

That’s not how physicians prefer to die. In a famous essay, an experienced physician wrote that most doctors would prefer to die at home, with less aggressive care than most people receive at the ends of their lives. They understand that such efforts are often futile and take away from the precious time that could be spent in the company of family and friends.

Intensive management of patients with poor prognosis can result in severe emotional damage to patients and their family members. They also have significant policy implications: On average, 25 percent of Medicare payments go to patients in the last year of life, with one-third of that spent in the last month, often on clinical services with negligible benefits.

Physicians certainly share some of the blame for these gaps in communication. But we need to be aware of the role health care systems play in shaping end-of-life interactions. Over-treatment is often encouraged, and with little guidance or feedback on how to navigate end-of-life care, physicians can feel vulnerable to malpractice lawsuits. Due to ever-changing regulations, most interns, residents, and attending physicians are forced to spend more and more time typing into their patients’ electronic health records and less time sitting with their patients, talking with them and understanding what they want and need at the ends of their lives. The issue of resource allocation may also play a role. Medical centers often suffer from a shortage of physicians, and struggle to balance comprehensive teaching with quality patient care.

Complete Article HERE!