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Talking to Children When a Parent Is Dying

By Ersilia M. DeFilippis, M.D.

 

When a Parent Is Dying

I closed the door quietly behind me and heard the voice of a young child.

A few minutes earlier, I had been paged to a family meeting in one of the conference rooms on the oncology floors. The room was overflowing with people: family members, the social worker, the palliative care team and me. My eyes immediately fixated on the youngest people in the room, who looked to be about 14 and 10.

They were my patient’s children. I had seen their mother earlier this morning; her eyes and skin looked more yellow every day. Her mind was cloudy and her vision was blurry, as the cancer continued to spread throughout her brain.

Now here I stood, trying to communicate the news of death and dying to multiple generations of family members. I felt like an unwelcome guest at a somber family picnic.

During the previous days, my patient had expressed her desire for the medical team to meet with her children without her. She said she did not understand enough of her disease, but she knew she was dying. There wasn’t much more to understand. She was just too sad to tell them herself.

Her daughter, the older child, had been reading on the internet about her mother’s cancer and its treatment.
“What stage is my mom?”
“Stage 4,” one doctor said.
“Do you know what that means?” the social worker asked.
“Yes, that’s the worst one.”
Silence filled the room.
A family member jumped in. “We don’t know what all of this will mean for your mom.”

As health care providers, we struggle with telling patients bad news – with communicating expectations, hopes and fears. It is a difficult but integral part of our job. I was trained in internal medicine, to deal with adults, not children. How was I qualified to have this conversation? The older child spoke like an “educated consumer” and knew all the right questions to ask – but I wondered if deep down she truly understood.

We have a desire to protect the young and innocent from catastrophes. We are tempted to use words like “lumps” and “bumps” to avoid the dreaded “C” word. We resort to vague descriptions, or we hide the cancer altogether.

But children often suspect something is wrong before they are even told. They notice nonverbal cues, see clues in our body language, overhear conversations between adults.

None of this was hidden from my patient’s daughter. All of the truths and tragedies of her mother’s cancer were plastered on the internet for her to read.

The younger child was quiet, not as able as his older sibling to synthesize this new information.

“Is that why she’s yellow?” the younger child asked. “And why she is so confused?”
“Yes, her cancer is getting worse,” the social worker said.

Studies show that levels of anxiety are lower in children who are told of their parent’s diagnosis, even if it’s cancer. However, we also know that the risk of post-traumatic stress disorder is high in children who have lost a parent. These forces impact our desires to tell children the facts and make us ask, how much is too much and how much is just right.

According to the American Cancer Society, all children dealing with a parent with cancer need the following: the name of the cancer, the part of the body affected, how it will be treated and how their own lives will be affected.

Older children, like my patient’s daughter, often express a need to know more.

“How much longer does she have?” the daughter asked.

“That is very difficult for us to say,” the social worker said. She then paused. “It is possible that the time you spend with your mother in the hospital may be the last time you see her.”

My grandmother learned that she had breast cancer when I was 6 years old. I was completely shielded from her diagnosis as well as from information about breast cancer itself – aided, at the time, by the absence of medical blogs and Twitter posts. My grandmother never lost her hair and her skin never turned yellow. But she lived with us in our house, and I never knew she had survived breast cancer until years later, when I had started on my career path in medicine. Fortunately, her outcome was different than that of my patient.

My patient could not bear the thought of being present at that meeting with her children. But she remained bold and courageous in wanting to tell them the truth. She called upon us as health professionals to convey the information she could not.

The conflict she faced surrounding when, how and what to tell her children was a heavy burden to bear. And it remained a difficult task for me and the whole team caring for her. One by one, members of the medical team filtered out of the room to leave the children to process what we had said with their father and aunts.

I lagged behind after the meeting to ask the family if they had any more questions we could answer, lingering uncomfortably until a family member politely said, “I think we just need some family time.” I looked back at the children on my way out, their eyes dry and without tears, before I closed the door behind me.

Over the next few days, my patient got weaker and more confused, with her children by her side. A week later, the two children said goodbye to their mom.

Complete Article HERE!

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‘I miss you so much’: How Twitter is broadening the conversation on death and mourning

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Death and mourning were largely considered private matters in the 20th century, with the public remembrances common in previous eras replaced by intimate gatherings behind closed doors in funeral parlors and family homes.

But social media is redefining how people grieve, and Twitter in particular — with its ephemeral mix of rapid-fire broadcast and personal expression — is widening the conversation around death and mourning, two University of Washington sociologists say.twitter

In a paper presented Aug. 20 at the annual meeting of the American Sociological Association in Seattle, UW doctoral students Nina Cesare and Jennifer Branstad analyzed the feeds of deceased Twitter users and found that people use the site to acknowledge death in a blend of public and private behavior that differs from how it is addressed on other social media sites.

While posts about death on Facebook, for example, tend to be more personal and involve people who knew the deceased, Cesare and Branstad say, Twitter users may not know the dead person, tend to tweet both personal and general comments about the deceased, and sometimes tie the death to broader social issues — for example, mental illness or suicide.

“It’s bringing strangers together in this space to share common concerns and open up conversations about death in a way that is really unique, ” Cesare said.

The researchers used mydeathspace.com, a website that links social media pages of dead people to their online obituaries, to find deceased Twitter users. They sorted through almost 21,000 obituaries and identified 39 dead people with Twitter accounts (the vast majority of entries are linked to or MySpace profiles). The most common known causes of death among people in the sample were, in order, suicides, automobile accidents and shootings.

Cesare and Branstad pored over the 39 feeds to see how users tweeted about the deceased, and concluded that Twitter was used “to discuss, debate and even canonize or condemn” them.

Among their findings:

  • Some users maintained bonds with the dead person by sharing memories and life updates (“I miss cheering you on the field”)
  • Some posted intimate messages (“I love and miss you so much”) while others commented on the nature of the death (“So sad reading the tweets of the girl who was killed”)
  • Others expressed thoughts on life and mortality (“Goes to show you can be here one moment and gone the next”)
  • Some users made judgmental comments about the deceased (“Being a responsible gun owner requires some common sense — something that this dude didn’t have!”)

The expansive nature of the comments, the researchers say, reflects how death is addressed more broadly on Twitter than on Facebook, the world’s largest social networking site. Facebook users frequently know each other offline, often post personal photos and can choose who sees their profiles. By contrast, Twitter users can tweet at anybody, profiles are short and most accounts are public. Given the 140-character tweet limit, users are more likely to post pithy thoughts than soul-baring sentiments.

Those characteristics, the researchers say, create a less personal atmosphere that emboldens users to engage when someone has died, even if they didn’t know the person.

“A Facebook memorial post about someone who died is more like sitting in that person’s house and talking with their family, sharing your grief in that inner circle,” Branstad said.

“What we think is happening on Twitter is people who wouldn’t be in that house, who wouldn’t be in that inner circle, getting to comment and talk about that person. That space didn’t really exist before, at least not publicly.”

Traditions around death and dying have existed for centuries, the researchers note. But increased secularization and medical advances in the 20th century made death an uncomfortable topic for public conversation, they write, relegating grief to an intimate circle of family and close friends.

Social media has changed that, they say, bringing death back into the public realm and broadening notions about who may engage when someone dies.

“Ten, twenty years ago, death was much more private and bound within a community,” Branstad said. “Now, with social media, we’re seeing some of those hierarchies break down in terms of who feels comfortable commenting about the deceased.”

Twitter use is still evolving, the researchers point out, making the site fertile ground for studying how social media is used for mourning in the future.

“New norms will have to be established for what is and isn’t appropriate to share within this space,” Cesare said. “But I think the ability of Twitter to open the mourning community outside of the intimate sphere is a big contribution, and creating this space where people can come together and talk about death is something new.”

Complete Article HERE!

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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

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‘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!

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Animal Matters: Veterinarian offers advice for pets’ final days

By Rob Blizard

wise-dog

One of the bright spots of serving for three years on Norfolk’s now-defunct Animal Advisory Board was getting to know Dr. Tyler Carmack, a veterinarian who focuses primarily on end-of-life care for pets. She also provides euthanasia services in the home.

The decision to euthanize an elderly, suffering animal and beloved companion is, at best, difficult for many pet owners. So, I was curious to know how Carmack advised people on determining the right time to act in such a situation.

“There are some great quality of life tools available online for families who are trying to determine if their pet is still comfortable and living their best possible life,” she told me. “Each of these scales ask family members to explore their pet’s appetite, hygiene, mobility, comfort and personality by ranking their pet with a numerical score.”

The scale that Carmack’s practice uses ranks pets on six aspects of well-being from 0-to-2. Pets with total scores between five to eight are considered to have a decreased quality of life; hospice is suggested for these animals. A score of less than five means euthanasia should be considered.

Carmack also noted that an individual score is not necessarily a reason to pursue euthanasia; however, these tools allow families to more objectively follow their pet’s progress over several days or weeks.

Many families believe a sign is an animal not eating, but, for example, a dog with bone cancer may be in severe pain for 90 percent of the day yet still be willing to eat for the pet owner.

dog-black-and-white

“It’s very individual for each pet, each disease and each family,” the doctor explained.

She pointed out that a second opinion, especially with an end-of-life veterinary practice like hers, can be helpful for people. In addition, she advised that the entire family have an in-depth conversation about the pet’s quality of life to make sure all parties are comfortable with decisions to be made.

“Each member of the family has a unique relationship and perspective about the pet, so being able to address everyone’s concerns is extremely valuable,” Carmack said.

Knowing that it is natural for people to hold out hope for a pet’s health to improve, I asked the hospice veterinarian if she found that people often waited too long before euthanizing an irreversibly-ill pet. Usually, it appears that such a determination is found only in hindsight.

“The most common regret that I hear from families is that they have waited too long in the past for a pet,” she said. “It is so difficult to make objective decisions about your pet during such an emotional time. Anticipatory grief can cloud judgment and make us want to hang on for as long as physically possible.”

As a result, one of her main goals during her hospice appointments is to explore the limits for each pet and its family before emotions overtake judgment so that when the saddest time ultimately arrives, people will be better prepared to say goodbye.

Most people want to do the most humane thing for their pets. As a result, Carmack often must explain what pain looks like in dogs and cats.

25-Year-Old-Cat

“Families cannot expect them to cry out in pain and tell them that they are hurting in such an obvious way. That goes against every instinct of an animal. They try to act as normal as possible, just like they would in the wild. Once families understand that what they are seeing are signs that their pet could be suffering or are quickly approaching that mark, they tend to make the right decision.”

Her biggest piece of advice for people who are approaching the inevitable heartbreaking decision about euthanizing a pet is to know the available options for the animal’s end-of-life care. Such knowledge will help pet owners be more comfortable with the doctor and staff providing care in the final days and months.

“It might be sad to think about, but being prepared before you are in this situation is critical,” Carmack said. “Don’t bury your head in the sand and hope your pets will live forever. You will have to help them during their end-of-life stage just like you have helped them at other times throughout their entire life. Even when it’s terribly hard, they are depending on you to do the best you can for them.”

Complete Article HERE!

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Dying on the streets: UVic study examines palliative care for the homeless

‘We were hearing all kinds of stories, and service providers themselves were feeling very distressed’

By Roshini Nair

UVic researcher Kelli Stajduhar says it's not atypical people living on the streets wind up spending their last days in places like cars or parks.
UVic researcher Kelli Stajduhar says it’s not atypical people living on the streets wind up spending their last days in places like cars or parks.

It’s an uncomfortable truth, but some people spend their last days in parks, streets and their cars, alone and in pain.

University of Victoria researcher Kelli Stajduhar has been leading a study looking at palliative care options for the homeless after hearing stories from outreach workers about people dying in the streets.

“We would really like to think as a society that we care for our people, especially at the end of their lives,” she said.

“[But] we were hearing all kinds of stories, and of course, these service providers themselves feeling very, very distressed at the kinds of things they were witnessing.”

Poor relationship to health care providers

Stajduhar — a palliative care nurse — is a strong advocate for better quality end-of-life care, and she said that people on the streets face significant barriers to getting care.

For one, they might not be diagnosed properly or too late.

Many homeless individuals come into the emergency room in pain but leave early or are turned away, she said.

Eventually they are diagnosed, but it is too late.

“They’re finally diagnosed with an illness that’s so far advanced even if a treatment option was offered, there’s really no benefit.”

Furthermore, Stajduhar said homeless individuals are often denied pain medication because health-care providers assume they’re just trying to access drugs.

These negative experiences with the health care system leave homeless people distrustful and unwilling to seek out care, she said.

“We’ve got these situations where people are suffering needlessly, and a big part of that is because of our own biases and stigmas against people.”

Staying within the community

Stajduhar said since many people on the streets are isolated and estranged from their loved ones. Often, the only community they know and love is the downtown community.

“We need to be seeing people and providing service to where they’re at, where they are most comfortable.”

Kelli Stajduhar, a professor of nursing at the University of Victoria, has been a palliative care nurse for three decades.
Kelli Stajduhar, a professor of nursing at the University of Victoria, has been a palliative care nurse for three decades.

But shelters and outreach workers are not equipped to provide palliative care, she said, and there is often no coordination between different groups to provide the best sort of end-of-life care.

Stajduhar said her team is looking at how palliative care providers can be flexible enough to meet people in the community.

One especially promising model is Toronto’s PEACH team — or the Palliative Education and Care for the Homeless team.

The PEACH team has outreach doctor, nurses, and social workers who see people wherever they happen to be — in shelters, on the streets or in a housing complex.

Stajduhar said she can imagine a similar model in Victoria, although there would need to be more funding.

“We have the nuts and bolts in our community to do that.”

Complete Article HERE!

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

by Lauren Ingeno

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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!

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Opening the Window

This doula helps clients make the most of death

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Death doula Shelby Kirillin chats with client Kim McGaughey.
Death doula Shelby Kirillin chats with client Kim McGaughey.

The Angel of Death is surprisingly upbeat.

“I know death is sad, but what’s wrong with dying?” Shelby Kirillin says, green eyes alight. “It’s OK. We’re all going to do it.”

Kirillin is a death doula — someone who guides the dying, and their families, through the end of life.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

In 18 years as an ICU nurse specializing in neuroscience, Kirillin witnessed too many bad deaths. She heard frantic families ask for every procedure possible in order to prolong life, instead of easing their loved one’s passing. She saw doctors who advocated continuing medical intervention, even when it was obvious that nothing more could be done.

Then in 2012, Kirillin, along with four Virginia Commonwealth University Medical Center colleagues, helped care for a fellow nurse who was dying of cancer. Their assistance allowed their friend to die at home, peacefully. And Kirillin found her new calling.

Kirillin began an apprenticeship with a death midwife in Canada and is completing her certification by the International End of Life Doula Association. Last year, she began practicing in Richmond. Insurance doesn’t cover her services; her fees are based on the time and level of support a client requires.

She’s not a hospice nurse, who manages patients’ medications and physical needs. She doesn’t give medical advice, nor is she a grief counselor. Rather, she is an “end-of-life transition coach,” as one client dubbed her, who guides people through the emotional and spiritual experience of death.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

“I can’t take away the fact that you have to kneel in a mountain of sorrow,” she says, paraphrasing end-of-life guru BJ Miller. “That can’t be avoided. But what I can do — I’m very much like a birthing doula — I hold the space.”

Family members may be mute in their grief, or mired in doubt, or consumed by guilt. Kirillin helps them to act, to labor along with their loved one. “It’s a beautiful day,” she may say. “Let’s open these windows.” Or, “You want to lay next to your mom? Here, let me move her. Lay next to your mom. Hold her. It’s okay.”

Mary Bolling “Mary Bo” Gassman found out she had cancer just seven weeks before she died. Her husband, Ken Gassman, couldn’t accept it. “I’m an alpha male, OK? And I’ve always been the family patriarch,” Gassman says. He made an executive decision: “We’re going to beat this cancer.”

As a result, Gassman and his oldest daughter, Elizabeth Gassman Chéron, didn’t agree on how best to manage Mary Bo’s symptoms. Chéron wanted to relieve her mother’s suffering; to her father, administering morphine meant bowing to the fact that his beloved wife was dying.

Kirillin became the ambassador, mediating between father and daughter. She encouraged Gassman to stay focused on the goal: not curing the incurable, but giving his wife a reason to wake up the next day, and the day after that. When Chéron admitted, “I just don’t know what to do,” Kirillin told her to trust herself. “You’re doing great,” she said.

On a cool October afternoon, Kirillin said it was time to open the windows. The breeze carried in the sweet scent of wildflowers, Gassman remembers. “A minute or two later, it was gone.” It was 4:32 p.m., and Mary Bo had passed away. “I think Shelby knew how she was going to ride out of there,” he says.

While Kirillin serves the family and friends of those soon to depart, she is chiefly concerned with the desires of the dying. Long before the curtain closes, she says, everyone should clearly state what living means to him or her. Kirillin’s own advance medical directive says, “If I can’t go to a baseball game, follow it, enjoy it and, the next day, remember it, I don’t want to survive.” It’s funny. But it’s true.

When dying becomes a possibility, she speaks with her clients about how they envision their last days. Most people say they want to die at home, for instance, but a hospital may offer more comfort for a patient who’s short of breath.

Kirillin helps people articulate what they want their death to look like, sound like and even smell like. Silence or songs? Coffee or lavender?

“When we die, we lose control,” says her current client, Kim McGaughey. “You don’t have any control over what’s happening, how you’re going to die. But I’ve got a lot of control over the beauty, and how special it is, and how I create this experience.”

At first, McGaughey didn’t want a death doula. After an eight-year battle with cancer, she had just been told she might have weeks to live, instead of months. She was feeling overwhelmed and didn’t want to complicate her dying. Then she met Kirillin and changed her mind.

“I might as well figure out how to do it, so that I enjoy it,” McGaughey says. “I know that sounds weird.”

Kirillin answered McGaughey’s questions about what death feels like. She gathered healing circles of friends and helped McGaughey write her own funeral service. McGaughey has asked her friends to write down memories of times they’ve spent together, and she wants these stories read aloud as she is dying. Everything is prepared.

“I want people to understand that death gets beautiful,” Kirillin says. “Death is amazing.” And sometimes, she says, it feels just like birth.

For more information on death doula services, visit Kirillin’s website, Peaceful Passings.

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