Tag: End of Life Care

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Head for the right exit

Many writers have tried to encourage conversations about dying, often with the aim of helping us achieve a ‘good death’.

Intensive care specialist Charlie Corke.

By Jane Mccredie

[A]t dusk some years ago, I walked past an open doorway in the southern Italian village of Paestum. Just inside, a body lay on a table, candles surrounding it, as locals filed in and out, paying their respects.

It struck me at the time how different this was from the general Australian experience, where the end of life is sanitised, hidden and often medicalised to the point of cruelty.

For centuries, our ancestors would have tended their dying relatives, washed their bodies, stood vigil over them in the homes where they lived and died. Many people around the world still do this, of course, but we in the West are more likely to end our days in aged care or, worse, a hospital intensive care unit. We may be subjected to futile, traumatic interventions right up to the moment we take our last breath.

In recent years a number of writers have sought to encourage franker conversations about dying, often with the stated aim of helping us to achieve a “good death”. Notable local books have come from intensive care physician Ken Hillman, general practitioner Leah Kaminsky and science writer Bianca Nogrady. But the reluctance to talk about death remains.

“It has become taboo to mention dying,” writes British palliative care physician Kathryn Mannix in With the End in Mind:

This has been a gradual transition, and since we have lost familiarity with the process, we are now also losing the vocabulary that describes it. Euphemisms like “passed” or “lost’’ have replaced “died” and “dead”. Illness has become a “battle”, and sick people, treatments and outcomes are described in metaphors of warfare. No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having “lost their battle”, rather than simply having died.

We must reclaim the language of dying, Mannix argues. Clear, unambiguous conversations about what is ahead offer support to the dying person as well as those who will mourn their death. “Pretence and well-intentioned lies” separate the dying from those they love, wasting the ­limited time they have left. Mannix first discovered the power of straightforward lang­uage as a junior doctor when a superior offered to describe to an anxious patient “what dying will be like”. “If he describes what? I heard myself shriek in my head.”

The senior doctor went on to describe in detail the pattern of dying he had observed over years of practice: increasing tiredness, more time spent sleeping, a gradual drift into unconsciousness, followed by changed respiratory rhythms until the breath finally stopped. “No sudden rush of pain at the end. No feeling of fading away. No panic. Just very peaceful … ” he told the patient.

Back in the tearoom, he told the young Dr Mannix this was probably the most helpful gift they could give their patients. “Few have seen a death,” he explained. “Most imagine dying to be agonised and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see ­something terrible.” Mannix was left amazed that it was possible to be this honest with patients­, revising her “ill-conceived beliefs about what people can bear”, beliefs that could have prevented her from having the courage to tell the truth.

Over the decades since that paradigm-­shifting experience, she helped countless people of all ages and backgrounds through the final stages of their lives. Their stories are threaded through this moving and informative book. “The process of dying is recognisable,” Mannix writes:

There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did (and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.

In Letting Go: How to Plan for a Good Death, Australian intensive care specialist Charlie Corke offers­ practical tools to help people make and communicate decisions about how they would want to be treated at the end of life.

Corke’s professional experience leads him to paint a very ­different picture of dying from that offered by Mannix. The ­specialties of intensive and palliative care are in some ways polar opposites: intensive care does everything possible to ward off the inevitable, while palliative care accepts death, seeking to ease the patient’s approach to it.

Corke admires the triumphs of modern medicine and the many achievements of his specialty, but he has also seen how easy it is for medical treatment to go too far. Most of us will die in old age, after a long period of declining health, he writes. One crisis or another will lead to us being taken to hospital by ambulance where, in the absence of clear ­instructions from us, medical intervention will escalate:

We will spend our last days connected to machines, cared for by strangers, and separated from our family. We will experience significant suffering, discomfort and indignity, receiving increasingly intense treatment that has a diminishing chance of success. Medical technology will dominate our last days and weeks. Our family will be excluded from the bedside, huddled in the waiting room, while “important” things are done to us. Time for connection and comforting, for any sort of intimacy or the opportunity to say goodbyes, will be missed …

Books on dying: With the End in Mind; Letting Go; Every Note Played

The purpose of this book is to help people avoid that outcome. Corke offers clear advice on questions to ask doctors, on writing and sharing a plan, and on appointing a substitute decision-maker to step in if we are unable to express our own views.

Above all, he stresses the importance of clear, unambiguous communication about what we want to happen at the end of life. If there is any doubt about our wishes, maximum intervention will be the result:

Wishes matter, but it can be difficult to get them heard. Wanting to be saved is easy. “To do whatever is required to save” is what everyone wants to do for you, needs to do, and is expected to do. It’s what our medical system is designed to do. It’s the default; it’s what you get. When we want to set limits, it’s more difficult …

All in all, this is a useful how-to manual for everybody who will at some point face death (which is of course all of us).

In Every Note Played, Lisa Genova chooses a different form to explore the end of life.

Over the decade since publication of her first novel, Still Alice, which was filmed with Julianne Moore in the lead role, Genova has mined her background as a neuroscientist for fictional ­material, producing novels about ­dementia, autism, traumatic brain injury and Huntington’s disease. In her fifth novel, she turns her attention to amyotrophic lateral sclerosis, telling the story of Richard, an acclaimed concert pianist diagnosed with the disease at the height of his career.

ALS is the central, and strongest, character in this book, dwarfing the somewhat one-­dimensional human actors and the overneat redemptions they achieve. The merciless progression of the neuro­degenerative condition is described with elegant, sometimes gruesome, precision as Richard loses the ability to control first his arms, then legs and, ultimately, everything but his eyes

As in the real-life case studies presented by Corke and Mannix, the approach of death pre­sents Richard and those close to him with appalling dilemmas: How much can we ask of others? How far should we go to preserve life? What does quality of life mean?

Richard’s state of mind as his disease progresses is not helped by the hearty refusal of his brothers to accept the inevitability of his fate. “What are you doing to fight it?” one asks when he sees Richard in a wheelchair. “You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”

Richard manages a slurred response — “Goo-i-de-a” — while privately wondering at his footballer brother’s incomprehension of his condition:

Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record … High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.

Richard’s brothers, like all of us, might have benefited from a share in what Mannix refers to as her “peculiar familiarity with death”:

Strangely, this is not a burden or a sadness, but a lightning of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time we can really experience is this present, evanescent moment.

Complete Article ↪HERE↩!

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‘Death is not a failure’: Medical schools adapt end-of-life lessons

By Lindsay Kalter

[L]ocal medical schools are in the process of a curricula revamp that will train students to focus more on end-of-life care, making Massachusetts the first in the nation to reach a statewide commitment to quality of life.

“Massachusetts is really leading the way on this. It led the way on universal health care, on gay marriage, and it’s leading the way on this, too,” said Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital and author of the book “Being Mortal.” “I’ve learned the question is not do you fight or do you give up. The question really is, what are we fighting for? What’s the quality of life we can fight for?”

The Massachusetts Coalition for Serious Illness Care has orchestrated the effort among four local institutions: Harvard Medical School, Boston University School of Medicine, Tufts University School of Medicine and University of Massachusetts Medical School.

Gawande, co-founder of the coalition, said Massachusetts has the opportunity to create a national model for medical schools across the country.

It’s an important shift, he said, from the fix-it mentality that many doctors are taught to possess. He said the extent of his end-of-life training amounted to an hour of discussion in the first two years of medical school.

“You go in focusing on wanting to be a hero and fix things,” Gawande said. “Teaching people in med school what it means to be an effective clinician for giving people cutting-edge care for quality of life — as opposed to quantity of life — is a neglected skill.”

The medical schools are taking inventory of what skills they’re already teaching and will add various training methods including role play patient actors. UMass Medical School’s simulation lab is already starting to be used for skills that extend beyond sewing and suturing, said Dr. Jennifer Reidy, the school’s chief of palliative care.

Medical students will be required to have conversations with people about breaking difficult news, prognosis and end-of-life planning.

“We’re using it to teach complex communication procedures,” Reidy said. “We want to ensure our newest clinicians are well-situated to practice these skills.”

The changes will be implemented in full by the beginning of next academic year, Reidy said.

Tiffany Chen, a third-year medical student at UMass, said the topic of death is still taboo even in the medical field.

“It’s really hard to talk about death, and it’s hard to conceptualize,” Chen said. “But death is not a failure and there’s always something you can do for a patient. If we can infiltrate the medical field with that mindset, we could do a lot of good.”

Complete Article ↪HERE↩!

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Dying with Dignity: A look at the life of a hospice nurse

BY ZACK WAJSGRAS

The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.

Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.

Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”

Lee Read speaks on the phone at the RoseWood Village assisted living home on Greenbrier Drive near the nurses work station. Read’s job involves constant calls with doctors, family members of patients, insurers and other Hospice of the Piedmont staff.

In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.

“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”

Dora Goldberg, 90, poses for a portrait at the RoseWood Village assisted living home on Greenbrier Drive after a game of bingo. Goldberg is one of Lee Read’s patients and suffers from dementia, like many of Read’s patients.

Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.

For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.

But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.

Lee Read holds a patients arm in the common room of the RoseWood Village assisted living home at Hollymead Town Center.

Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.

For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.

“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”

But after discovering Hospice of the Piedmont, that process became much easier.

“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”

For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.

Lee Read (right) speaks on the phone at the foot of Juanita Burke’s, 97, bed at the RoseWood Village assisted living home at Hollymead Town Center. Burke, who had little strength left, died several days later.

“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”

Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.

“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”

The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be here.”

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Hospice is different from palliative care but both are considered ‘comfort care’

Comfort care at the end of life means managing symptoms, such as pain, anxiety and shortness of breath, says Janet Burda, advance practice nurse at Palos Community Hospital.

By Donna Vickroy

[D]espite confusion over what exactly constitutes “comfort care,” former first lady Barbara Bush’s decision to opt for it is opening doors onto some very important conversations, according to local end-of-life care experts.

Before she died Tuesday, the 92-year-old Bush had been struggling with congestive heart failure and chronic obstructive pulmonary disease, reports said.

When news broke last Sunday that she was opting for “comfort care” during her final hours, a flurry of questions followed.

Is comfort care not medical care? Is it a form of hospice? A form of palliative care?

Janet Burda, advanced practice nurse with Palos Community Hospital’s Home Health program in Palos Heights, said comfort care is a general term for keeping a patient comfortable at the end of life.

“Doing that means providing medical care to help with symptom management,” said Burda, who works with both hospice and palliative care.

Relieving anxiety, pain and shortness of breath are examples of comfort care, she said.

The other part of comfort care, she said, “is helping relieve anxiety for the caregiver.”

Often caregivers don’t know what to expect at the end of a loved one’s life, Burda said, and they often don’t know how to recognize symptoms of discomfort in a patient who is not able to talk or otherwise communicate. “We can help them with that.”

Palliative or hospice?

Palliative and hospice care both address the physical, emotional, medical, spiritual and psychosocial needs at a vulnerable time in a patient’s life, she said. They differ, Burda said, in terms of when and where they are applied.

Palliative care can begin at diagnosis, while hospice care is relegated to the last six months of life, Burda said.

Rachael Telleen, director of community outreach programs for JourneyCare, a hospice and palliative care organization that hosts presentations across the region including the south suburbs, said, “Palliative and hospice are both considered comfort care.”

Comfort care, she said, “is a term people are using now because it’s easier for doctors to initiate it.”

The word hospice can really scare people, she said. “So, instead, if we can approach the situation using the word ‘comfort,’ people are more accepting and more open to it.”

Telleen said while both palliative and hospice aim to manage pain and symptoms, palliative care is a support that may be provided while a person is still receiving aggressive treatments.

Hospice, on the other hand, is for patients who are no longer receiving aggressive treatments, she said.

“A patient in hospice receives a lot more services,” Telleen said.

Burda said palliative care allows the patient the option of going back and forth to the hospital. It consists of a team in the inpatient world and a team in the community setting, she said. They work alongside an attending physician.

“A person who has cancer and is receiving chemo or radiation can be under palliative care for symptoms such as pain, anxiety, shortness of breath, nausea, vomiting or diarrhea,” she said.

“A palliative care team can help manage those symptoms but the patient wouldn’t qualify for hospice because they are not necessarily terminal,” she said. “We’re kind of that stepping stone before hospice.”

While palliative care can go on for an extended period of time, hospice is for patients who are expected to live six months or less, Burda said.

To qualify for hospice, a patient must have a qualifying terminal illness and meet certain criteria, Burda said.

“Old age is not a qualification necessarily,” she said.

All of these options are typically covered by insurance and Medicare, Burda said. Hospice is a Medicare benefit and the components — medications, equipment, physician fees — are typically lumped together.

To some people, Burda said, palliative care sounds better, even if it would be more beneficial for them to be in hospice because of its around-the-clock access to a nurse and symptom care.

“But sometimes that scares people. They don’t want to lose that option to go back to the hospital,” she said. “They are not ready to accept that it is the end.”

Sometimes, she said, she walks people through different scenarios to help them picture what the journey will look like.

“At the beginning the patient could be doing fine. That’s the best time to get hospice involved because they get to know the patient and the caregiver and help them on this journey,” she said.

All end-of-life care should begin with conversation, Burda said.

People should take steps to educate themselves and family members about preferences and options, she said. More information on the Palos program can be found here.

“Talk to your family. Have that critical conversation about what you want the end of your life to look like. That affords you the control,” she said.

“There are people who say they don’t know and don’t care. That’s fine too but then designate someone to make those decisions for you when the time comes that choices need to be made,” she said.

Advanced directives

Telleen said Bush’s death came on the heels of National Healthcare Decisions Day, which was April 16.

She said the former First Lady’s passing has sparked conversation about end-of-life planning.

“We want people to know what they want before they’re in a crisis,” she said. “Making decisions in a crisis is the most challenging time for people to think clearly.”

Telleen said she encourages everyone older than age 18 to think about advanced care planning and to develop an advanced directive.

“That is being prepared in case something happens and you can’t speak for yourself. And that can happen when you’re 20 or 30. It doesn’t just happen to people who have an illness that is progressing. It could happen because of a car accident. It could happen at any point in an unexpected manner,” she said.

“Ask yourself, ‘If I couldn’t speak for myself who do I identify to speak on my behalf and does that person understand what your wishes would be?’” Telleen said.

Telleen said JourneyCare (https://journeycare.org/) provides a free document called Five Wishes available to residents in 10 counties in northeast Illinois to help them make advanced care decisions. For more information, go to journeycare.org/advance-care-planning.

Complete Article ↪HERE↩!

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A Harder Death for People With Intellectual Disabilities

By TIM LAHEY, M.D.

[S]everal weeks after my patient was admitted to the intensive care unit for pneumonia and other problems, a clear plastic tube sprouted up from the mechanical ventilator, onto his pillow and down into his trachea. He showed few signs of improvement. In fact, the weeks on his back in an I.C.U. bed were making my 59-year-old patient more and more debilitated.

Still worse, a law meant to protect him was probably making him suffer more.

When the prognosis looks this bad, clinicians typically ask the patient what kind of care they want. Should we push for a miracle or focus on comfort? When patients cannot speak for themselves, we ask the same questions of a loved one or a legal guardian. This helps us avoid giving unwanted care that isn’t likely to heal the patient.

This patient was different. Because he was born with a severe intellectual disability, the law made it much harder for him to avoid unwanted care.

In New Hampshire, where I practice, and in many other states, legal guardians of people with intellectual disabilities can make most medical decisions but, by law, they cannot decline life-sustaining therapies like mechanical ventilation. These laws are meant to protect patients with disabilities from premature discontinuation of lifesaving care. Yet, my patient was experiencing the unintended downside of these laws: the selective prolonging of unpleasant and questionably helpful end-of-life care in people with disabilities.

For my patient’s guardian to discontinue unwanted life-sustaining therapies, she had to petition a probate court judge. Busy court dockets being what they are, this can take weeks. Once in court, the judge asks questions aimed at making the right legal decision. How sure is the guardian or family member of the patient’s wishes? What’s the doctor’s best estimate at a prognosis? Often the judge will ask an ethicist like me to weigh in on whether withdrawal is an ethically permissible option. Then the judge makes a decision.

This slow, impersonal, courtroom-based approach to end-of-life decision-making is a far cry from the prompt, patient-centered, bedside care that all of us deserve.

This legalistic approach to end-of-life decision-making also creates unreasonable expectations of legal guardians. Most loved ones have a sense of what the patient they represent would want at the end of life, but they would probably squirm to justify that intuition in a court of law. Yet this is routine for legal guardians of people with intellectual disabilities in my state and others with similar laws. This biases our care toward continuation of what are often uncomfortable, aggressive and potentially unwanted end-of-life treatments.

My patient’s legal guardian was not a family member, but she had known him for years before this hospitalization. She said my patient’s quality of life came from interacting non-verbally with caregivers, listening to music, and eating favorite foods like applesauce. She described the excited hoots he would make when interacting with a favorite nurse.

The contrast to what my patient was experiencing in the I.C.U. was stark. He was sedated. His unsmiling mouth drooped open, a breathing tube between his lips. In place of music, there were the beeps and whirs of the machines that kept him alive. He could not eat. Plastic tubes penetrated every orifice.

Still further, my patient endured the discomforts and indignities that accumulate even in the best I.C.U.s. His muscles grew weaker and stiffer. He developed skin sores and infections. He needed minor surgeries to place the tubes that delivered artificial nutrition and artificial breaths every hour of the day.

Seeing all of this, my patient’s guardian did not think my patient would want to live this way. The I.C.U. can save your life, but it is not where most of us want to die.

In other states, patients with intellectual disabilities have an equal right, via the advocacy of their legal guardians, to avoid unwanted care. A 2010 New York State law, for instance, lets the legal guardians of people with intellectual disabilities withdraw life-sustaining therapies as long as doing so fits the guardian’s sense of the patient’s wishes.

In accord, a policy statement from the American Association on Intellectual and Developmental Disabilities states, “Withdrawing or withholding care may be appropriate in some situations …. Treatment should not be withdrawn or withheld only because a person has a disability.”

This reference to substandard medical treatment of people with disabilities is important. In hospitals across the country, people with disabilities have been subject to all manner of substandard care, including inappropriately premature discontinuation of end-of-life care. This has improved over the past few decades, but a new systematic review shows people with intellectual disabilities still have difficulty accessing high quality end-of-life care, including palliative care specialists. That means the medical system routinely shortchanges people with intellectual disabilities at the end of life, and states like mine add legal insult to that medical injury.

My patient’s caregivers held several multidisciplinary meetings to choose the right way forward. There was consensus that the medical prognosis was dim, and the legal guardian said the patient did not have adequate quality of life. Multiple physicians wrote letters to support a petition to the court to refocus care around comfort and dignity. Ultimately, the legal guardian and the Office of Public Guardian felt they could decline continued intensive care only if it was completely futile, and decided not to submit the petition to the court.

To date, my patient has spent over 140 days in the hospital with little overall improvement. He has endured multiple medical interventions, and unavoidable complications are mounting. Unless the laws change, I.C.U.s across the nation will continue to do the same thing to other patients just like him.

Complete Article ↪HERE↩!

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There is more than one way to die with dignity

By Ing Wong-Ward

“Who are you here to see?”

On this day, I was at Mount Sinai Hospital, in the oncology ward. The receptionist I usually check in with wasn’t at her desk. I was being greeted by a volunteer. Dark hair, wide eyes and a smile like a child’s doll. High school co-op student, maybe?

I handed over my health card and told her my doctor’s name.

“I’m sorry, I don’t know who she is. What are you here for?”

Her smile widens.

“Because I’m a patient?” I retort.

I know I’m being rude. But it’s an oncology ward. What does she think I’m here for? To discuss the weather? The shortage of wheelchair-accessible parking spaces in the lot?

What I really want to say is, my doctor is a palliative-care specialist. I’m seeing her because I have cancer. I’m preparing for my death.

I don’t look like I have cancer, let alone the incurable kind. I have all my hair. My friends and husband assure me my colour is good. Dressed in my normal clothes and not the pajamas I currently favour, I look reasonably well – for a middle-aged woman who also has spinal muscular atrophy, a congenital neuromuscular condition.

I rely on a motorized wheelchair to get around and need personal support workers to assist me in all aspects of daily living. It’s been this way forever, but now I have colon cancer, and two external abdominal bags to collect various bodily fluids.

This, to put it mildly, complicates things.

My palliative-care doctor is a compassionate young woman who wouldn’t look out of place in a medical drama. She has been guiding me through my own recent hospital drama: I was readmitted to hospital a couple of weeks earlier, for yet another emergency.

I’ve been fighting off a major abdominal abscess for more than a year now. At one point, my abscess was so large, one of my doctors admitted surprise that I was upright. This is what initially led to my cancer diagnosis. A colon biopsy confirmed the cancer was malignant. In October, I was told my cancer was inoperable, despite 28 rounds of radiation.

At least it’s not metastatic. Localized, but nowhere else. For now, anyway. Plus, my surgeon tells me, I likely have years with this cancer. Not months or weeks, like some of his other patients.

The challenge now is the infection associated with the abscess. During this current crisis, antibiotics are working. What my surgeon can’t tell me is when the next infection will hit, or when antibiotics may fail.

Some patients reinfect every month, he tells me. I’ve done well, he adds. I tell him I couldn’t handle being hospitalized every month. He acknowledges I would need to evaluate my quality of life, if this became my reality. In that moment, my decision to seek palliative care early seems the smartest decision I’ve made in a while.

Like most Canadians, I had limited understanding of palliative care before I had cancer. To me, “palliative care” was synonymous with “you are about to die.”

That’s not the case. On my first palliative visit, the doctor explains the word is Latin for “to cloak.” She personally likes that, seeing her role as guide and protector to patients who are coping with the most difficult time of their lives.

I need her guidance. There is no clear path around how to deal with cancer while living with a disability. I’m used to being disabled. It’s my normal. My quality of life up to now has been exceptional, complete with a husband I adore, a sweet, sassy daughter and a brand-new career.

Like everyone else diagnosed with cancer, my life has suddenly imploded. I find myself in this new world, navigating how to continue while knowing the end is coming much sooner than I’d like.

That’s why I’ve sought out palliative care. My own research leads me to studies showing that having a palliative-care expert can help me prolong my quality of life through the management of symptoms, such as pain that I know will likely worsen over time. My family doctor concurs, telling me outright that I need this.

This new relationship has enabled me to talk about my greatest fears. After my conversation with my surgeon, I fear dying slowly of sepsis, waiting for my organs to fail. I’ve agreed to a Do Not Resuscitate order, which ensures I won’t be hooked up to machines in the ICU, prolonging The End.

During this particular admission to hospital and based on what my surgeon has said, my choices seem stark. Down the road, I could die slowly from an infection that will shut down my organs, or sign up for a medically assisted death.

Then, my palliative-care doctor arrives at my bedside. She points out I have bounced back from severe, acute episodes before. She also knows I don’t want an assisted death and takes the time to explain there are options available, such as palliative sedation, a process where I can have large doses of morphine to keep me comfortable. She firmly tells me I am not close to needing this. My goal needs to be focused on getting better and getting home, to my daughter.

As she explains this, I start to relax. She’s given me the window I need to live my life, as compromised as it now is. It is not the life I would have chosen, but it still has meaning. My task now is to figure out what that meaning is. And her task is to help me to define my priorities while maximizing the quality of my life with medical therapies and emotional support.

It’s an interesting time to be thinking of my life as a person who is both disabled and has cancer. Less than two years ago, the federal government enacted a new law enabling Canadians with incurable conditions, whose death is foreseeable and are suffering irremediably, to ask a doctor to end their lives.

It’s been called “dying in dignity,” but for me, that’s not the way I want to go, at the hands of a doctor, wielding a poisoned syringe.

I believe no one with a terminal illness should be forced to endure suffering – but, if there is one lesson for me in the past year, death is not the only way to alleviate suffering. Managing physical suffering feels like traveling a winding road. Some days, it feels never-ending; other days, manageable, almost like the life I had before. Some days are so bad, I’m convinced death really is the only relief, but I’m brought back to reality when I think of what I could miss out on.

My life is definitely smaller now. I doubt I will ever work full-time again. I barely leave my apartment. Thanks to my father’s financial generosity, my husband has been able to take unpaid leave from his work to be with me. The time we spend together is precious. Even in its ordinariness, it is meaningful.

I appreciate the world differently now. It is as though time has slowed for me to see the small details of life, whether it be the softness of my bed sheets or watching snow drift down through my apartment window.

I’m trying to live with dignity, as I always have, despite the very real medical indignities I have been subjected to.

Which is why it dismays me greatly there are continuing attempts to make it easier for people without terminal conditions to ask a doctor to end their life. It dismays me that a lobby organization calling itself Dying With Dignity is not actively lobbying for increased access to palliative and hospice care, or advocating for more community supports for people with disabilities to live as productively as possible. In other words, to live with dignity.

We are all going to die, but before we do, each one of us has a right to a good quality of life, even to the very end. Yet too many Canadians do not have adequate access to palliative and hospice care. The lobbying efforts of those to equalize this are rarely discussed in our media.

I’ve chosen my path, thanks to the help of empathetic doctors and my own advocacy. My hope now is that more Canadians have the right to do the same, without the implied suggestion there is only one real way to die with dignity.

Complete Article ↪HERE↩!

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Facing finality: it’s important to plan for your final days

A recent survey reveals that seniors and their adult children often do not take the necessary steps to plan for their final years of life.

By Cory Fisher

[D]espite the fact that most seniors have very specific ideas regarding how things should be handled when it comes to their care at the end of life, a surprising number have not shared this information with their offspring.

Too often seniors and adult children are eager to avoid the topic and therefore do not take the steps necessary to plan for the final years of life — including getting financial affairs in order and creating plans for care when a senior’s health inevitably begins to decline.

A new survey by Home Instead, Inc. found that while 73 percent of seniors have a written will, only 13 percent have actually made arrangements for long-term care. Additionally, 79 percent of seniors are more comfortable planning for their funerals than planning for when they need full-time care or hospice.

New research reveals it’s the children who feel the most awkward about broaching the subject of a parent’s final wishes. Even as parents approach their final years, adult children still find it hard to accept their parents’ mortality and believe the topic might be upsetting to parents or grandparents.

Yet once the subject has been broached, a 2017 survey of 505 seniors age 75 and over, and 510 adults between the ages of 45 and 69 revealed something quite different. A whopping 88 percent of seniors said discussing plans for their final years made them feel closer to their adult children, and 97 percent of adults who helped with their parents’ planning said it “gave them peace of mind that things would go okay.”

Those end-of-life fears that lead to avoidance only delay the inevitable. In most cases, adult children will be monitoring their parents’ care and the more information they have, the better.

Research, as well as Home Instead Senior Care experts say there are ways to combat those fears. Talk it out, don’t wait for a crisis, put a plan in place, consult experts on end-of-life issues and follow the “40-70 Rule,” which means that if you are at least 40, or your parents are at least 70, it’s time to start about certain senior topics.

Some of the most common fears experienced by seniors, according to research compiled by Home Instead, Inc., include:

  • Fear No. 1: “I hate the thought of having feeding tubes and ventilators keeping me alive.”

What you can do about it: Consider establishing a living will. Living wills detail an individual’s treatment preferences in the event he or she is unable to make those decisions. Many lawyers will prepare a living will as part of an estate planning package.

  • Fear No. 2: “I’m afraid I will end up in a nursing home, and I don’t want to die in a hospital or institution.”

What you can do about it: There are many options for end of life care outside of nursing homes and hospitals. Adult children can help their parents research home care options so the entire family is prepared when the time comes.

  • Fear No. 3: “What if I get dementia and can no longer make my own decisions?”

What you can do about it: It’s wise to have seniors designate a trusted person with power of attorney who will act on their behalf in the event that they are no longer able to advocate for themselves. This will give them peace of mind that their care wishes will be met regardless of their mental acuity.

For adult children, experts suggest the best way to address the end-of-life fears is to communicate clearly with parents about their wishes way in advance. Record specific discussions by taking notes, which could be helpful when making decisions in the future.

For those who feel a great deal of anxiety surrounding this topic, Home Instead offers free resources to encourage seniors and their adult children to talk together about important life plans, which can include end-of-life care, finances, insurance and funeral planning.

A novel component of the free resources offered includes a music generated feature entitled, “Compose Your Life Song.” The light-hearted online exercise, which can be found at http://www.caregiverstress.com/end-of-life-planning/compose-life-song/my-song/, can help families broach difficult subjects more easily.

After completing the activity, seniors are presented with their own customized “song” and accompanying resources that will help them reflect on their personal preparedness during their final years.

The song is a great way to gracefully transition into more serious topics, said Buck Shaw, owner of the Home Instead Senior Care office serving Sacramento, Nevada, Placer and El Dorado counties.

“It’s fun — I’ve done it myself,” he said. “It’s a very basic questionnaire that is a nice blend of topics. It’s so important to talk about these things — I can’t tell you how often I’ve seen families have disagreements when plans aren’t in place. One part of the family thinks grandpa wants one thing, while the other side thinks the opposite.

“It creates an awkward division of the family. I’ve even seen very educated people — doctors and teachers — arguing with relatives who are trying to keep grandpa alive when he was good to go. This can cause rifts in the family that are hard to repair.”

Participants who go online to create their own song respond “yes” or “no” to thought-provoking statements, such as, “I have checked off an item on my bucket list in the past year,” “I frequently visit with people whose company I enjoy,” “I have talked to my family about my end-of-life wishes” and “I have established a will and advanced directives.” This can open the door to deeper, more constructive conversations, said Shaw.

“About 77 percent of adult children think their parents have plans in place, while only 50 percent do,” he said. “In the long run, if we become advocates for seniors, we all win in the end. It’s all about raising awareness and doing the right thing.”

Complete Article ↪HERE↩!