How do people die from cancer? You asked Google – here’s the answer

Every day millions of internet users ask Google life’s most difficult questions, big and small. Our writers answer some of the commonest queries

By

 ‘Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression.’
‘Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression.’

Our consultation is nearly finished when my patient leans forward, and says, “So, doctor, in all this time, no one has explained this. Exactly how will I die?” He is in his 80s, with a head of snowy hair and a face lined with experience. He has declined a second round of chemotherapy and elected to have palliative care. Still, an academic at heart, he is curious about the human body and likes good explanations.

“What have you heard?” I ask. “Oh, the usual scary stories,” he responds lightly; but the anxiety on his face is unmistakable and I feel suddenly protective of him.

“Would you like to discuss this today?” I ask gently, wondering if he might want his wife there.

“As you can see I’m dying to know,” he says, pleased at his own joke.

If you are a cancer patient, or care for someone with the illness, this is something you might have thought about. “How do people die from cancer?” is one of the most common questions asked of Google. Yet, it’s surprisingly rare for patients to ask it of their oncologist. As someone who has lost many patients and taken part in numerous conversations about death and dying, I will do my best to explain this, but first a little context might help.

Some people are clearly afraid of what might be revealed if they ask the question. Others want to know but are dissuaded by their loved ones. “When you mention dying, you stop fighting,” one woman admonished her husband. The case of a young patient is seared in my mind. Days before her death, she pleaded with me to tell the truth because she was slowly becoming confused and her religious family had kept her in the dark. “I’m afraid you’re dying,” I began, as I held her hand. But just then, her husband marched in and having heard the exchange, was furious that I’d extinguish her hope at a critical time. As she apologised with her eyes, he shouted at me and sent me out of the room, then forcibly took her home.

It’s no wonder that there is reluctance on the part of patients and doctors to discuss prognosis but there is evidence that truthful, sensitive communication and where needed, a discussion about mortality, enables patients to take charge of their healthcare decisions, plan their affairs and steer away from unnecessarily aggressive therapies. Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression. It also does not hasten death. There is evidence that in the aftermath of death, bereaved family members report less anxiety and depression if they were included in conversations about dying. By and large, honesty does seem the best policy.

Studies worryingly show that a majority of patients are unaware of a terminal prognosis, either because they have not been told or because they have misunderstood the information. Somewhat disappointingly, oncologists who communicate honestly about a poor prognosis may be less well liked by their patient. But when we gloss over prognosis, it’s understandably even more difficult to tread close to the issue of just how one might die.

Thanks to advances in medicine, many cancer patients don’t die and the figures keep improving. Two thirds of patients diagnosed with cancer in the rich world today will survive five years and those who reach the five-year mark will improve their odds for the next five, and so on. But cancer is really many different diseases that behave in very different ways. Some cancers, such as colon cancer, when detected early, are curable. Early breast cancer is highly curable but can recur decades later. Metastatic prostate cancer, kidney cancer and melanoma, which until recently had dismal treatment options, are now being tackled with increasingly promising therapies that are yielding unprecedented survival times.

But the sobering truth is that advanced cancer is incurable and although modern treatments can control symptoms and prolong survival, they cannot prolong life indefinitely. This is why I think it’s important for anyone who wants to know, how cancer patients actually die.

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’
Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’

“Failure to thrive” is a broad term for a number of developments in end-stage cancer that basically lead to someone slowing down in a stepwise deterioration until death. Cancer is caused by an uninhibited growth of previously normal cells that expertly evade the body’s usual defences to spread, or metastasise, to other parts. When cancer affects a vital organ, its function is impaired and the impairment can result in death. The liver and kidneys eliminate toxins and maintain normal physiology – they’re normally organs of great reserve so when they fail, death is imminent.

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food, leading to progressive weight loss and hence, profound weakness. Dehydration is not uncommon, due to distaste for fluids or an inability to swallow. The lack of nutrition, hydration and activity causes rapid loss of muscle mass and weakness. Metastases to the lung are common and can cause distressing shortness of breath – it’s important to understand that the lungs (or other organs) don’t stop working altogether, but performing under great stress exhausts them. It’s like constantly pushing uphill against a heavy weight.

Cancer patients can also die from uncontrolled infection that overwhelms the body’s usual resources. Having cancer impairs immunity and recent chemotherapy compounds the problem by suppressing the bone marrow. The bone marrow can be considered the factory where blood cells are produced – its function may be impaired by chemotherapy or infiltration by cancer cells.Death can occur due to a severe infection. Pre-existing liver impairment or kidney failure due to dehydration can make antibiotic choice difficult, too.

You may notice that patients with cancer involving their brain look particularly unwell. Most cancers in the brain come from elsewhere, such as the breast, lung and kidney. Brain metastases exert their influence in a few ways – by causing seizures, paralysis, bleeding or behavioural disturbance. Patients affected by brain metastases can become fatigued and uninterested and rapidly grow frail. Swelling in the brain can lead to progressive loss of consciousness and death.

In some cancers, such as that of the prostate, breast and lung, bone metastases or biochemical changes can give rise to dangerously high levels of calcium, which causes reduced consciousness and renal failure, leading to death.

Uncontrolled bleeding, cardiac arrest or respiratory failure due to a large blood clot happen – but contrary to popular belief, sudden and catastrophic death in cancer is rare. And of course, even patients with advanced cancer can succumb to a heart attack or stroke, common non-cancer causes of mortality in the general community.

You may have heard of the so-called “double effect” of giving strong medications such as morphine for cancer pain, fearing that the escalation of the drug levels hastens death. But experts say that opioids are vital to relieving suffering and that they typically don’t shorten an already limited life.

It’s important to appreciate that death can happen in a few ways, so I wanted to touch on the important topic of what healthcare professionals can do to ease the process of dying.

In places where good palliative care is embedded, its value cannot be overestimated. Palliative care teams provide expert assistance with the management of physical symptoms and psychological distress. They can address thorny questions, counsel anxious family members, and help patients record a legacy, in written or digital form. They normalise grief and help bring perspective at a challenging time.

People who are new to palliative care are commonly apprehensive that they will miss out on effective cancer management but there is very good evidence that palliative care improves psychological wellbeing, quality of life, and in some cases, life expectancy. Palliative care is a relative newcomer to medicine, so you may find yourself living in an area where a formal service doesn’t exist, but there may be local doctors and allied health workers trained in aspects of providing it, so do be sure to ask around.

Finally, a word about how to ask your oncologist about prognosis and in turn, how you will die. What you should know is that in many places, training in this delicate area of communication is woefully inadequate and your doctor may feel uncomfortable discussing the subject. But this should not prevent any doctor from trying – or at least referring you to someone who can help.

Accurate prognostication is difficult, but you should expect an estimation in terms of weeks, months, or years. When it comes to asking the most difficult questions, don’t expect the oncologist to read between the lines. It’s your life and your death: you are entitled to an honest opinion, ongoing conversation and compassionate care which, by the way, can come from any number of people including nurses, social workers, family doctors, chaplains and, of course, those who are close to you.

Over 2,000 years ago, the Greek philosopher Epicurus observed that the art of living well and the art of dying well were one. More recently, Oliver Sacks reminded us of this tenet as he was dying from metastatic melanoma. If die we must, it’s worth reminding ourselves of the part we can play in ensuring a death that is peaceful.

Complete Article HERE!

Q+A: How Should You Talk to Your Doctor About End-of-Life Care?

07_14_08 width=

No one wants to talk about death. But when a loved one is faced with old age or a serious illness, there are choices that need to be made. How does the patient feel about life-sustaining measures in the face of terminal illness? Does he or she have strong feelings about mechanical breathing, CPR or chemotherapy? What factors will be most important to the dying person — physical comfort, no pain, treatment costs?

As an emergency medicine doctor, Laura Vearrier, MD, a clinical assistant professor at Drexel University College of Medicine, sees plenty of family members having to make these decisions for sometimes impaired or incapacitated patients. Stress is high. Emotions are involved. What’s worse, there isn’t time for physicians to sit down and properly explain medical procedures or lay out options.

Advanced care planning allows people to maintain authority in their medical decision-making. However, the current legal framework for advance directives make them inadequate as an effective end-of-life planning tool, argues a recent paper from Vearrier, published in the HealthCare Ethics Committee Forum.

Her solution? More mandatory, frank communication between primary care physicians and their patients about the end of life and medical care — long before a patient is unhealthy.

Vearrier weighed in on problems with the current end-of-life care paradigm and how it can be improved.

What is end-of-life planning? Who does it primarily concern?
A lot of people don’t start talking about end-of-life care until they have a chronic disease, but advance care planning is really something that every adult should be thinking about early on, long before a time of illness, when there are a lot of emotions involved. End-of-life care decisions fall on a continuum that ranges from a focus on prolonging life with all available technology, to a focus primarily on comfort. There are decisions people need to make about, for instance, whether having more time alive with family and friends is preferable, even if that means prolonging suffering and giving up independence. Advance directives, commonly known as a living will, allows you to document your end-of-life medical treatment preferences. A healthcare proxy allows you to designate a person you trust as a decision maker on your behalf.

How did you become interested in the issue of end-of-life planning?
In the Emergency Department, I see many patients who are critically ill, and their families haven’t thought about their options ahead of time. When doctors present families with options about their loved one, they often don’t understand what the doctor is talking about, much less what their loved one would want. And with having to deal with the stress of a sick family member, it’s even harder to process new information.

 How common are living wills?
According to the 2008 Advance Directives and Advance Care Planning: Report to Congress, only 18 to 36 percent of the adult population has completed advance directives. And even those with serious medical conditions have completed advanced directives at only a slightly higher rate. A study of cancer patients in 2000 showed that only 9 percent of patients had discussed advanced directives with their oncologists, and only 23 percent of the remaining patients indicated they wished to do so. There are also differences between racial and socioeconomic groups. The report shows that white race and a higher socioeconomic status are related to a greater likelihood of having a living will.

What is the Physician Orders for Life-Sustaining Treatment Paradigm?
POLST was developed as a response to the failed process of advance directives as an end-of-life planning tool, but it is not intended to replace advanced directives. It is a health care planning tool that encourages doctors to speak with patients who are very ill and can be transferred between different health care facilities. A POLST form is completed by a health care professional rather than a patient. The POLST form identifies “Do Not Resuscitate” orders, but it also lists other treatment preferences, like whether a patient would wish to go to a hospital or stay home.

You are critical of the POLST form in your recent paper. Why?
POLST has played an important role in increasing the documentation of end-of-life preferences. However, the problem remains that people do not really understand a lot of their options. The POLST form uses a lot of specialized jargon, and it can be even more confusing than advance directives. Even social workers who discuss the forms with their patients have a poor understanding of some of their options. So when it comes time for a physician to interpret the orders, they might not really be fulfilling the patient’s treatment wishes.

What surprised you the most when researching this topic?
I was surprised about how poorly people understand their options when it comes to having to make decisions about end-of-life care and also how uncommonly people discuss it with their physicians. Physicians may not even be aware that their patients have an advance directive.

What’s the solution?
Increased communication that occurs on a routine, non-emergent basis. I think talking about the end of life and medical care should be a discussion that starts when someone is healthy, with the awareness that it’s something that may, and probably will, change over time. Since treatment preferences may change with age, health status and the current state of medical technology, discussions should occur on a yearly basis with every adult patient in the case that something happens to them. Also, everyone should be discussing their preferences with their families.

A lot of physicians are hesitant or may feel poorly prepared to have these discussions, which is why they don’t happen until someone is ill or has exhausted all of their treatments. Then lack of time becomes a barrier. To change this, it should be something that’s done on a routine basis at every yearly check-up with a primary care doctor. It’s just like the “in case of an emergency” safety protocols that are communicated on every single airplane flight. It’s repeated every time, so everyone is aware what could happen and what the procedure would be. There needs to be a culture shift, so that patients are educated and empowered about their treatment options, in case they are ever in a position where they are no longer capable of making those decisions.

Complete Article HERE!

My grandmother’s last months

By Gaia Squarci

Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.
Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.

My grandmother’s life and mine overlapped for 27 years. I always called her “Nonna.”

Our age difference and profoundly contrasting values and way of thinking did not prevent us from developing a strong bond and a relationship punctuated by mischievous games and moments of tenderness and humour. We were amused by our differences.

001

“You know, I was still young when you were born,” she told me a few weeks before she died. “It’s a little like we grew up together.”

At a lunch table a few months earlier in Milan, I learned from my mother, her daughter, that Nonna, 85, suffered from incurable liver cancer. Years before, she had already survived two bouts of breast cancer.

002

Nonna would tell me time and time again that the news of my birth had given her the strength to fight.

When I learned that she was sick again, I had just landed in Italy, where I would be for only three days before flying back to New York.

003

Even more heartbreaking than the fear of saying goodbye to her was the fact that my grandmother did not know how sick she was. My mother and aunt believed she could not bear the thought of a third bout with cancer, this time, affecting her liver. Nonna was told by family members that her liver was ill.

004

No one ever mentioned the word “cancer.”

Because of this, one question haunted us until the day she died: Did we have the right to know the truth about her condition when she did not?

005
Marisa Vesco embraces her nephew Luca Squarci.

Nonna spent most of her last months at home, surrounded by family. She reconciled with the idea of death and said she could slowly feel it coming.

Doctors felt that surgery and chemotherapy would be pointless.

006

In the midst of all this, I realised my mother was losing her mother.

After moving back to Italy for a few months, I witnessed the range of my mother’s emotions and the energy she devoted to the time they had left together.

Nonna’s world shrank to a few walls and fewer streets. In this narrow existence, every detail and daily act took on deeper meaning.

007

One of the things my mother treasured most was giving her mother a bath. She did not hesitate to touch her old body, and she did not want others to do it on her behalf.

I joined my mother and grandmother in the bathroom to quietly observe them with my camera.

008

As I experienced those precious moments, I imagined myself at an older age and thought about how time changes one’s perspective on being a woman.

As my grandmother faced my lens, completely naked, her body bearing the signs of past and present illnesses, she did not show the slightest bit of shame – only trust and pride.

009

If you spoke with people in Nonna’s town they would say she never left the house without being enveloped in a cloud of perfume, her white hair perfectly coiffed and her face tinged with makeup.

I was surprised by the way she confronted being ill without losing her femininity. She was able to poke fun at herself. More than once she asked me, “Am I going to end up on Vogue or Marie Claire?”

010

On Oct. 11, 2015, the day Nonna died in Biella, Italy, I was across the world in Brooklyn, New York. I had spent five months with her, celebrating her life instead of mourning her death.

I remember taking a walk through the Greenpoint neighbourhood of Brooklyn and staring for a while at kids competing in a race. I was unable to come to terms with the fact she was no longer a part of the world around me.

I struggled with the concept of death and the abstract emotion we call grief. I found peace only when I returned to Italy to spread Nonna’s ashes.

011

My family and I walked to Nonna’s favourite place in the mountains not far from Cossato in northwestern Italy, the town in which she had grown up.

Her ashes felt heavy in my hands. I threw them far up into the air, and they fell all over the grass, and all over me. My mother, brother and aunt did the same, again and again.

In the end, we were covered in Nonna’s ashes and so was the field around us.

Months later, my mother sent me a photograph of that field. It was completely covered in flowers.

Complete Article HERE!

Assisted-living facilities limit older adults’ rights to sexual freedom, study finds

Georgia State University

senior intimacy

ATLANTA — Older adults in assisted-living facilities experience limits to their rights to sexual freedom because of a lack of policies regarding the issue and the actions of staff and administrators at these facilities, according to research conducted by the Gerontology Institute at Georgia State University.

Though assisted-living facilities emphasize independence and autonomy, this study found staff and administrators behave in ways that create an environment of surveillance. The findings, published in the Journals of Gerontology: Social Sciences, indicate conflict between autonomy and the protection of residents in regard to sexual freedom in assisted-living facilities.

Nearly one million Americans live in assisted-living facilities, a number expected to increase as adults continue to live longer. Regulations at these facilities may vary, but they share a mission of providing a homelike environment that emphasizes consumer choice, autonomy, privacy and control. Despite this philosophy, the autonomy of residents may be significantly restricted, including their sexuality and intimacy choices.

Sexual activity does not necessarily decrease as people age. The frequency of sexual activity in older adults is lower than in younger adults, but the majority maintain interest in sexual and intimate behavior. Engaging in sexual relationships, which is associated with psychological and physical wellbeing, requires autonomous decision-making.

While assisted-living facilities have many rules, they typically lack systematic policies about how to manage sexual behavior among residents, which falls under residents’ rights, said Elisabeth Burgess, an author of the study and director of the Gerontology Institute.

“Residents of assisted-living facilities have the right to certain things when they’re in institutional care, but there’s not an explicit right to sexuality,” Burgess said. “There’s oversight and responsibility for the health and wellbeing of people who live there, but that does not mean denying people the right to make choices. If you have a policy, you can say to the family when someone moves in, here are our policies and this is how issues are dealt with. In the absence of a policy, it becomes a case-by-case situation, and you don’t have consistency in terms of what you do.”

The researchers collected data at six assisted-living facilities in the metropolitan Atlanta area that varied in size, location, price, ownership type and resident demographics. The data collection involved participant observation and semi-structured interviews with administrative and care staff, residents and family members, as well as focus groups with staff.

The study found that staff and administrators affirmed that residents had rights to sexual and intimate behavior, but they provided justifications for exceptions and engaged in strategies that created an environment of surveillance, which discouraged and prevented sexual and intimate behavior.

The administrators and staff gave several overlapping reasons for steering residents away from each other and denying rights to sexual and intimate behavior. Administrators emphasized their responsibility for the residents’ health and safety, which often took precedence over other concerns.

Family members’ wishes played a role. Family members usually choose the home and manage the residents’ financial affairs. In some instances, they transport family members to doctor’s appointments, volunteer at the facility and help pay for the facility, which is not covered by Medicaid. They are often very protective of their parents and grandparents and are uncomfortable with new romantic or intimate partnerships, according to staff. Administrators often deferred to family wishes in order to reduce potential conflict.

Staff and administrators expressed concern about consent and cognitive impairment. More than two-thirds of residents in assisted-living facilities have some level of cognitive impairment, which can range from mild cognitive impairment to Alzheimer’s Disease or other forms of dementia. They felt responsible for protecting residents and guarding against sexual abuse, even if a person wasn’t officially diagnosed.

###

Co-authors of the study, Georgia State alumni, include Christina Barmon of Central Connecticut State University, Alexis Bender of Ripple Effect Communications in Rockville, Md., and James Moorhead Jr. of the Georgia Department of Human Services’ Division of Aging Services.

The study was supported by a grant from the National Institute on Aging at the National Institutes of Health.

Read the study HERE!

Complete Article HERE!

How to Stay Calm in the Face of Death, According to an ER Doctor

How to Stay Calm in the Face of Death, According to an ER Doctor
By

Although you might feel like you’re going to die if that bartender doesn’t get you a beer right now, this isn’t exactly a dire situation. What is, however, is if you’re faced with a real life or death scenario. In these cases, most people panic, and not hyperbolically.

That’s why we spoke to seasoned ER guru Dr. Ryan Stanton (and spokesperson for the American College of Emergency Physicians), who faces life or death situations every single day he goes to work. He’ll teach you how to keep cool if you ever find yourself in such a predicament.

001

Prepare for any situation

You can’t possibly prepare yourself for all circumstances, since we’d all be pretty screwed if some Leftovers-type stuff went down, but first aid training goes a long, long way. Hit up your local fire department, American Red Cross, or hospital for a basic first aid class, which will help you help others when it matters most. You’ll learn how to give non-creepy, hands-only, live-saving CPR that doesn’t require you to basically tongue kiss a stranger, plus super useful skills like what to do when someone’s choking, and how to stop major bleeding. And you can also learn how to shock someone’s heart using an AED machine if they go into cardiac arrest.

Know you don’t always have to do something

Even if you’re prepared, know your limitations, because sometimes doing very little is the best possible thing. Let’s say you come across a car wreck, and someone is badly injured. As Dr. Stanton explains, just being there is good enough: “Sometimes the best thing you can do is call 911 and talk to the person,” he said. “Give them comfort.” If the person in the crash is already bleeding badly, any stress on top of that will make them “more likely to have complications.”

And to further hammer home the point that real life is not like being in a hospital drama on TV, you don’t have to be a hero and save everyone. So if you see someone having a seizure, outside of “keeping [the person’s] airway open,” (a technique you learn in basic first aid!), your job is to sit there and wait for EMS to arrive. “People feel like they have to do something,” Dr. Stanton said. “They try to shove stuff in the person’s mouth to keep them from breaking teeth, or put their fingers in their mouth to keep them from swallowing their tongue. And then you just end up with two people hurt instead of one.”

Prioritize, prioritize, prioritize

When someone comes into the ER with a problem, Dr. Stanton asks himself the same question: “What’s going to kill them first?” Probably that hospital food, says every comedian from the ’80s. But if that person is not bleeding to death and is breathing fine, then Dr. S has bought himself enough time to figure out what to do next.

By way of example, let’s go back to our imaginary person in a car crash: Dr. S says some newbie doctors can get distracted by the victim’s nasty-looking sideways ankle and not realize that they’re also not breathing. Prioritizing allows you to focus on what’s critically important at the moment. You can only do one thing at a time.

002

Know that sometimes there are no solutions

Everyone knows they’re supposed to calm down in a stressful situation, but it’s not just about taking a few deep breaths (though you should also do that). “Panic has never fixed a problem,” Dr. Stanton said. “Fixing a problem involves working through what you know — if it’s not part of what you know, find the people who know it.” If someone else can’t help, perhaps there are no solutions whatsoever to the super stressful, life-threatening situation you find yourself in. “[Sometimes] you can’t change the current situation,” he said. “All you can [affect] is what’s going to happen now and moving forward. Stay calm and think about what you can do [next].”

Gain confidence through education, experience

ER doctors stay calm while saving lives everyday, and they’re able to keep cool by relying on a combination of experience and education. Now, outside of being that guy in Catch Me If You Can and impersonating a doctor to gain some life-saving experience, first aid training will suffice.

Dr. Stanton put said experience to work one Sunday outside of the ER, when someone passed out behind him in church. While other people were freaking out, Dr. Stanton followed his own advice and everything turned out fine.

Other, non-passed out churchgoers were concerned that the unconscious person didn’t have a strong pulse, and that it was imperative to check their sugar. But Dr. S knew the best move in this situation — make sure the victim was breathing and stay there until EMS arrived. And to stay calm. In a hospital, “if the doctor is calm and relaxed, the whole [ER] is calm and relaxed and everyone does their job.” Be the calm one in any life-threatening situation you encounter, and you’ll do just fine.

Complete Article HERE!

BEING THERE: A death doula’s mission

By Ellen McCarthy

Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.
Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.

Before he enters the room, Craig Phillips pauses for a deep exhale.

“Just to let everything go,” he says. “And to remember that I’m here for them.”

Until he walks in, he won’t know whom, exactly, he’s about to see. Today it’s an elderly woman in a blue hospital gown. Eyes closed. Jaw dropped open. Breathing loud and labored, but regular.

There is a little green circle by her name on the white board in the nurses’ station. Hospice center code for “actively dying.”

“She doesn’t have anyone with her,” a nurse says. So Phillips goes, pulls a chair up to her bed and introduces himself.

“I’m not here to poke or prod you,” he says softly. “I’m just here to be with you. I’m just here to sit with you.”

The work of a death doula — Phillips’s work, now — is primarily about presence. He is there to ease the passage from this world to the next. And he knows that the most valuable thing he can offer anyone taking that most solitary of journeys is his company. So he sits, silently wishing them peace and comfort.

Especially with patients who can no longer speak, Phillips has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, “you get an understanding of how well wanted you are.” When his grip is returned, he knows that he is welcome.

Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.) And like the childbirth doulas from whom they draw their name, their mandate is to assist and accompany. Their patients’ experience may be quieter, more sorrowful, but it is no less sacred. Or scary.

As the baby boomers move into retirement, fresh consideration is being given to what it means to grow old, which measures to take to treat illness and, ultimately, how we die. There’s a growing recognition among hospice workers and palliative-care givers that pain management is not enough. That the spirit must be attended to as much as the body. And that the soon-to-be-bereaved need help along with the dying.

It’s out of this recognition that death doulas are emerging. Most say they feel almost inexplicably called to the role. And profoundly touched by it.

A good death

On a sunny spring day in Alexandria, Virginia, 30 women and one man sit in a windowless hotel conference room, having traveled from all over the East Coast and paid $600 to learn to serve as death doulas.

“Our role is to walk alongside” the dying “in their journey,” says Henry Fersko-Weiss, president of the International End of Life Doula Association (INELDA), one of several organizations offering certification in the field.

The weekend-long training will cover the best ways to touch a dying person, when to use aromatherapy and guided visualizations, strategies to relieve overburdened family members, how to organize a “legacy project” to help capture the patient’s life, assisting at the moment of death and helping loved ones process their grief in the weeks that follow.

On the first morning, Fersko-Weiss, a social worker who worked with hospice facilities for decades before creating an end-of-life doula program in 2003, asks each of the students to recall a death that affected them. How it smelled and looked and felt. How it shaped their concept of what constitutes a “good death.”

One woman talked about her daughter’s stillborn baby.

“That was the hardest hurt I ever felt,” she said. “I didn’t understand how you could take a baby who was full-term.”

Fersko-Weiss nodded and observed that she may be able to transform her pain into something that could aid dying patients and their families.

“If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”

Later, the prospective doulas talk about their reasons for coming. Several had had negative experiences with the death of a close relative. A few were birth doulas who wanted to assist with the exit from, as well as the entrance into, life. One woman had suffered a brain injury and a near-death experience. All said that they wanted to be of service in a way that would make this final transition somehow better for others.

They will be called upon to fill all kinds of roles, Fersko-Weiss told them. Sometimes patients may need help with physical care; other times, families will need assistance with errands or household chores. In all cases it will be a doula’s job to listen, without judgment, to honor the experience of both the dying person and their loved ones, and to facilitate meaningful interactions between them.

“As a doula, it’s important to encourage people to say everything they need to say,” Fersko-Weiss explains, “so that they don’t look back and really regret it.”

Beautiful souls

Craig Phillips’s path to end-of-life doula work wasn’t straight, but he thinks he was always inching toward it. He grew up in Wilkes-Barre, Pennsylvania, next door to a cemetery that served as his playground. In college, he had a chance meeting with Elizabeth Kubler-Ross, the famed psychiatrist whose groundbreaking work shaped our modern understanding of death. And all through his life, Phillips has had an intense awareness of his own mortality.

At 61, he has the look and presence of a yogi, but he spent most of his adult life in the corporate world. Several years ago, his sister called, saying that her ex-husband was suffering from advanced ALS and living in a facility very close to Phillips’ Baltimore home. So Phillips went to see him. And kept going, two or three times a week, for the last 2 1/2 years of the man’s life.

“I’d bring him flowers,” he recalls. “I’d tell him stories. I’d take oil over and rub his feet, stuff like that. Just devoted myself to him. And it was a beautiful thing.”

A man in Phillips’ running club mentioned volunteering as a death doula, so when he retired last fall, he linked up with Gilchrist Hospice Care, which serves more than 750 patients daily in the Baltimore area and established its own end-of-life doula program in December 2009. It has since grown to more than 150 volunteers.

After 20 hours of training in January, Phillips spent a morning shadowing a mentor doula at Gilchrist’s facility in Towson.

“We walked into a patient’s room, and she said, ‘Isn’t this person beautiful?’ I could see that they were. And she said, ‘Yes, all my patients are beautiful,’ ” he recalls. “You walk into a room and there’s someone there with their mouth open, looking very near death. Perhaps no teeth in their mouth and a three-day beard or whatever. And I look at these souls and they’re beautiful. It’s the oddest thing. Their guard is down. They’re just who they are in their most real, beautiful state.”

Phillips has helped long-term-care patients communicate with a letter board and even washed a dog for one family. On his weekly visits to an elderly man who was still alert, Phillips brought videos of the patient’s favorite big band performances.

But with many patients, Phillips just sits, quietly meditating and sending good wishes. He tells them that they are safe. And that they are not alone. One woman was unable to speak, but when he said goodbye after three hours, “she mouthed the words ‘Thank you’ and held out her hands like I was dear to her,” he says.

The work has also produced an unintended side effect. It has pushed Phillips’ awareness of mortality even further to the forefront of his mind.

And happily so.

“The more immediacy, for me, that I have of this,” he says, “the more appreciation I have for every day, every minute.”

Complete Article HERE!

The way we die: elderly people need end-of-life options

by Mario Garrett

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?
It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.

Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.

In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.

With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.

In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.

In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today 001caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.

The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.

The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.

There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.

If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.

In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)

Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.

 Complete Article HERE!