Death And Dying – Page 303 – The Amateur's Guide To Death & Dying

While decades ago parents may have been inclined to keep secrets from children and steer away from discussions of death and dying, child psychology and hospice experts believe being honest about how life and death work is a healthier approach.

It started off as one of the more grim moments in the final days of my dad’s long struggle with Alzheimer’s disease. A hospice chaplain and a funeral home director sat with me and my mom at her kitchen table. Knowing Dad’s death was imminent, we were choosing prayer memorial cards and planning a memorial service when my 5-year-old daughter took a break from playing with the dog to offer some much-needed levity.

“What are you guys talking about?” Gracie asked, climbing into my lap and surveying the catalogs of coffins, urns and other funeral needs.

“We’re talking about how sick Grandpa is,” I said, distracted.

“You’re talking about him dying,” Gracie corrected, catching everyone’s attention before adding innocently, “Is Grandpa going to get buried or burned up?”

The whole table couldn’t help but smile through tears at her youthful candor.

A few weeks earlier, I had explained to her the difference between being buried and cremated when she noticed a cemetery outside the car window. At the time, she was startled by the idea that people were underground, so I told her that some people choose to get turned into ashes that can be spread in places they loved.

I realized that to Gracie, my cemetery explanation was a piece of a puzzle about life that she was slowly putting together in her own way.

She made us laugh again when she followed up with her next question:

“When you burn up my grandpa, can I have his arm?”

In most other cases, my instinct is to shelter and protect my daughters from the harsh realities of the real world. I cheer on her first wiggly tooth and perpetuate her excitement about the first visit from the Tooth Fairy. I lie in bed with her at night and tell long stories about imaginary parties she throws with all her favorite fictional characters. I go out of my way to never complain about my weight or physical appearance in front of them, because I dread the day they’ll realize that women make a pastime out of being hard on themselves.

Yet for some reason, as my dad’s illness and, ultimately, his death, were upon us, I felt the need to do the opposite: to be real about how life — and death — work.

Thankfully, I’ve found that child psychology and hospice experts agree with this approach.

While decades ago parents may have been inclined to keep secrets from children and steer away from discussions of death and dying, the hospice counselors we worked with set aside time to read Gracie a children’s book that helped her talk about losing a loved one. In the weeks leading up to his death, they invited her to ask any questions she might have about what was happening. They counseled me, too, on how to best answer her questions in an age-appropriate way.

“Allowing children to be a part of the grieving process with the community is actually helpful and healing for kids,” said Sally Miller, chaplain at Advocate Good Samaritan Hospital in Downers Grove. “Naming the loss that they’re probably already aware of, and being there in that open space to comfort it is how they’re going to be able to move through their grief in a safe way.”

Miller said she and her colleagues who counsel patients both in and out of Good Samaritan Hospital encourage families to be direct with children by using the words “death” and “die” instead of “expire,” “pass away” or other euphemisms that could confuse vivid imaginations. They encourage parents to follow children’s lead in offering explanations, being mindful not to have an air of secrecy, but also not to give children details that may be too frightening or too abstract for them to comprehend.

The advantage, Miller said, is that children who are properly guided and supported as they learn about heavy issues will be exposed to age-appropriate exploration of emotions, coping skills and other emotional intelligences that will serve them for years to come.

I agree with this theory. But still I was surprised when, minutes after my dad died, the hospice chaplain asked if I was going to let Gracie come to see her grandpa one last time to say goodbye. The chaplain reasoned that after spending years visiting her sick grandpa weekly, it could be jarring for her to return to the house and see no trace of him. Knowing our family was also not planning a traditional wake and funeral, she argued that it would be quite a leap to ask a 5-year-old to process her grandpa disappearing and landing in heaven.

Though I wasn’t completely sure it was the right choice, we let the girls come join us at my parents’ house a half hour later. They ran in the door excitedly, greeting the rest of the family with hugs and kisses and surveying the surroundings.

I asked the chaplain if I should say something directly to Gracie, but she reminded me to let the child lead. “Just let her get to it,” the chaplain said. “She will.”

And sure enough, minutes later Gracie asked to see Grandpa.

With tears in our eyes, we watched her walk confidently into her grandpa’s room, where she climbed up the railing of his hospital bed and kissed his forehead.

“Bye, Grandpa,” she said. “You’re going to go to heaven. And angels are going to guide you.”

Complete Article HERE!

August 26, 2016August 24, 2016

Advanced care planning addresses end-of-life issues

By BRIAN AND KATHY DERRY

As summer winds down, it’s time to look again at that to do list, especially an item that most of us have put off for years, doing our Advance Care Plan. Fortunately there’s a way to face that task with others, making it easier.

Our “Kitchen Table Conversations About Advance Care Planning” workshop poses the questions that need to be addressed in a facilitated setting which encourages sharing. With stories, role playing and a panel of health care professionals who help people at the end of life, one participant described the workshop as “most impactful and educational for me.”

Our aim is to prepare participants for the most important part of advance care planning, the conversation with loved ones. As one person said, “My husband and I have differing wishes regarding end of life care, so the exercises were pretty revealing.” It’s easy to see the benefit of understanding those differences before a crisis develops, and before dementia sets in. Another participant who experienced the long journey of dementia with his wife said, “Once mid- to late-stage dementia develops, the individual will no longer be competent to make any decisions. It is essential to clearly identify your decision makers in both health care and financial matters.”

In the workshop we spend time looking at whom you might choose as your advocate or health care power of attorney. What are they expected to do? Who would be best able to ask the tough questions, such as will the person recover and what is the expected quality of life? Your advocate should have a good understanding of what you would say

Medicine has made significant progress in developing tools that lengthen life. Diseases that have been considered terminal can now be managed as chronic illnesses, like diabetes and heart disease. This has resulted in a movement toward shared decision making, with the doctor providing realistic side effects and outcomes, and the patient sharing his or her personal values and goals. Together they decide what treatment is appropriate for the individual.

One tool that we all have become familiar with through medical TV shows is CPR. In a typical TV depiction, the actor/patient survives. In reality, between eight and 18 percent of patients who’ve had CPR actually leave the hospital alive, and many sustain physical trauma like broken ribs. Whether a person survives depends on the age and health of the patient.

In our workshop we introduce people to the POLST, the Provider Orders for Life Sustaining Treatment, a document prepared by your health care provider that says whether you want such a procedure performed on you. Especially anyone who is frail or has a terminal diagnosis should consider having a conversation with their doctor about a POLST. With the POLST form posted on your refrigerator, emergency services will not use CPR or other procedures that you have declined.

Shared medical decision making is taken to another level with a new and growing specialty, pal-liative care. The palliative care specialist can be involved at any stage of life to focus on managing side effects of treatment and improving quality of life. This can be particularly helpful as chronic illnesses become more burdensome. Palliative care, sometimes called comfort care, focuses on dignity and quality of the remaining life, and requires ongoing management and conversation.

Hospice is also an important consideration when planning for life’s end. Hospice uses a team of doctors, nurses, social workers, aides, clergy and trained volunteers to augment the care you receive at home. The focus is on comfort and assuring the highest quality of life for an individual nearing life’s end. Treatments and testing that cause discomfort are suspended. Surprisingly, research is showing that many patients who choose comfort care earlier in their illness actually live longer with a higher quality of life.

You’ll learn more at the workshop, and gain the confidence and skills to begin having those “kitchen table conversations” of your own with loved ones. Imagine the relief and peace of mind you’ll feel to share your wishes! We hope you’ll join us at upcoming workshops this fall – you can get details at kitchentableconversations.eventbrite.com or by calling Missoula Aging Services at 728-7682.

Complete Article HERE!

August 24, 2016August 23, 2016

Mission creep doesn’t benefit patients at the end of life

The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.

By Samuel Harrington

When my father was 88 and the picture of health for his age, he taught me, an experienced physician, an unexpected lesson.

We were discussing treatment options promoted by his primary-care physician and other doctors for an aortic aneurysm — a ballooned segment of blood vessel at risk for dangerous rupture in his abdomen. He turned to me and asked, “Why would I want to fix something that is going to carry me away the way I want to go?”

My father had the generally accurate impression that if his aneurysm ruptured, he could demand pain medicine, decline emergency surgery and be dead from internal bleeding within a few hours or, at most, a day or two.

With his unexpected question, he directly challenged the assumption that a doctor’s advice is always in a patient’s best interest, particularly regarding a medical problem late in life. This proposition had been my general belief, but after more than two decades as an internist and gastroenterologist, he had prompted me to reconsider it.

Furthermore, Dad was making an important distinction, between care at the end of life (in this case, palliative care for pain) and treatment (aneurysm repair). He was also suggesting a natural exit strategy. Not suicide, to which he had a moral objection, and not physician-assisted suicide, which was not a legal option in his home state of Wisconsin.

Despite his generally decent health, we both thought that he was too old for a major surgical repair, so I suggested he undergo an outpatient procedure to insert a stent to prevent the ballooning artery from worsening — that would at least postpone the threat of rupture. My reasoning was that with the stent, he was likely to enjoy the birth of his first great-grandchild and that without it, he would probably never know her.

My father lived five more years and met 12 great-grandchildren. Three of those years were good ones, but two of them were not.

I have asked myself, “Was it worth it?” I know that he asked himself that, too. His mantra for the last two years of his life was “I have lived too long.”

The 2003 book “Tyranny of Treatment” documented the terrible medical procedures used in 18th-century England: draining blood from swollen legs and testicles, radical mastectomy without anesthesia; bleeding arms to “cure” eye problems.

Painful, futile treatment continues to this day, particularly with elderly patients who often are not informed of the difference between palliative care, designed to minimize pain while trying to preserve quality of life at the end, and aggressive treatment more designed to prolong life at any cost, using such methods as surgery or chemotherapy. Often they are not informed about the benefits of letting some conditions run their course.

Here in America, there is a deeply held belief that advances in medicine will eventually conquer or cure the chronic scourges of cancer, dementia, heart disease, lung disease and diabetes. This notion leads many elderly patients to seek aggressive treatment not only to spare their loved ones grief but because they hope (and expect) to be cured, if only they hold on just a little longer.

This is one reason that every year more than 75,000 people older than 85 die in intensive care units seeking care that proves to be futile, according to a 2004 study, and why more than 65 percent of our senior citizens die in institutions when a significant majority say they would prefer to die at home, according to a 2014 report by the Institute of Medicine.

The impulse to treat often prompts us to forget that many elderly patients have multiple medical problems brought on by chronic organ system weaknesses. Focusing aggressive therapy on one serious diagnosis can complicate another to the point of death, disability or prolonged hospitalization. Beyond that, too many doctors succumb to research from drug and device makers that show incrementally positive results for therapies that mean little to someone at the end of a long life.

As an example, a friend recently told me about her 89-year-old mother’s consultation with an oncologist for a Stage 4 cancer of the pancreas. The doctor launched into a description of some new treatment options.

After listening carefully to what the doctor offered, the patient posed the question, “How long can I expect to live if I decline chemotherapy, and how much longer can I expect to live if I undertake therapy?” When the doctor responded that the answer to both questions was three to six months, she cut short the consultation.

According to the science behind the studies, three months of added life expectancy is considered a statistically significant improvement. But for many people at an advanced age, three months of added “life” in hospitals or nursing homes, possibly suffering side effects, may not be an appealing prospect. My friend’s mother looked at the statistics and saw no practical benefit.

Facing the tyranny of treatment is not usually so dramatic. Not every patient has the option to decline surgery for a threatening aneurysm or chemotherapy for late-stage cancer. Most patients have multiple smaller decisions to make in the mission creep of treatment vs. care. These patients and their families need help thinking about the natural progression of aging and visualizing what they want at the end. Then, if they decline treatment and choose palliative care, they can consider an exit strategy.

One patient I spoke with was living a bed-to-chair existence and suffering urinary incontinence from multiple mini-strokes. She resisted the initial insertion of a bladder catheter as one indignity too far. The thought of an invasion of body, followed by regular catheter exchanges, brought a ripple of sadness to her eyes.

She brightened, however, when I explained that refusing to exchange the catheter would ultimately create a painless urinary-tract infection. If she chose, she could then decline antibiotics, and with the help of palliative medications would be able to die comparatively comfortably of a progressive systemic infection. She now had an exit strategy.

If asked by patients, most doctors are willing to discuss quality of life at the expense of quantity of life. In elder care, that conversation should include a discussion about futile treatments vs. making sure the last days on earth are comfortable. As Sherwin Nuland wrote in “How We Die,” “The real event taking place at the end of our life is our death, not the attempts to prevent it.”

Therefore, discussions with our trusted physicians should evolve from how to die later to how to die better, including with an exit strategy.

In my father’s case, he was clear at the end that he wanted to avoid further interventions designed to prolong life. At age 93, after six months in hospice, medicated for comfort, he died quietly at home.

Complete Article HERE!

August 23, 2016August 21, 2016

Saying goodbye: Inside the world’s first children’s hospice

FOR a parent whose child is facing death, the future looks bleak. But at the world’s first children’s hospice, staff ensure that life is celebrated, as our writer reports.

By Rachel Carlyle

'Death happens, but the living goes on' — ‘Death happens, but the living goes on’

At the end of the main corridor in Helen House, the world’s first children’s hospice, lies the Little Room. It’s smaller than the other eight bedrooms, simply furnished, and it’s the place parents dread.That’s because it’s where they come when their child has died: the room is kept cold to preserve the body and give the family time to say their goodbyes and give their last hugs. Of course, there are tears here but also laughter and smiles: the room has been decorated as a fairy castle and a spaceship over the years. One time, on a boiling hot day, a grieving family took a break for a water fight on the grass outside.

“We could hear squeals from the parents and siblings of the child who had died,” recalls Clare Periton, chief executive of the hospice in Oxford. “It’s moments like those that capture what we’re about here. Death happens, but the living goes on, there’s still room for fun, and no one judges you.“Parents who come here with their children are scared by the Little Room, but afterwards say it made all the difference to be able to have time with them to say their goodbyes and come to terms with the fact that their child is cold.”

Children-hospice2 — The normalising of death as part of life is what makes hospices so special

We can’t see the room today because it’s being used, but we visit the Starfish Room, the equivalent in Douglas House, the sister hospice for 16 to 35 year olds next door. The room is at the centre of the seven-bedroom building. There’s a discreet door at the back that leads directly outside via a long corridor.It was designed for coffins to enter and leave by – but no one can ever remember it being used. “The young people tell us they came in through the front door and they will go out of the front,” says Clare. This normalising of death as part of life is what makes hospices so special.On the bed in the Starfish Room is a lovingly hand-stitched quilt featuring a parable that explains the room’s name. A man spends his days rescuing beached starfishes by throwing them back into the sea. “What possible difference are you making?” someone asks. “There are so many stranded starfish.”“It makes a difference to this one,” the man replies, holding up a single starfish.“It’s a philosophy to live by,” says Clare. “You can’t change the world completely but you can make a difference to your bit. This is what we are trying to do here.”

Helen House was the world’s first children’s hospice when it opened in 1982. It was the result of a friendship between a nun, Sister Frances Dominica, and the parents of a terminally ill two year old, Helen Worswick, desperate for respite care. It was built in the grounds of the convent; Douglas House was added in 2004.

'You can’t change the world completely but you can make a difference to your bit' — ‘You can’t change the world completely but you can make a difference to your bit’

It should be a subdued place because what could be more upsetting than a child’s death? But there’s a bustling, playful atmosphere. “It’s full of laughter and smiles. Staff aren’t moping about, there’s none of that tilted head earnest sympathy,” laughs Clare, who took over six months ago but has worked at the hospice for 11 years having trained as a nurse.“Children need to play and have fun, no matter what is going on in their lives.”There’s a huge, airy playroom at the heart of the modern building. There’s a teacher on site, a games room, a hot-tub room (where parents can take a well-deserved break), music room, sensory room and two family flats. There are 250 children on the books at any one time: some come here for end-of-life care in the last few weeks, others with life-limiting conditions come for respite care a few times a year to give their parents a break.Staff go to incredible lengths to make children’s last days happy and memorable: one 21 year old with cystic fibrosis was desperate to see the new Paddington film before he died, but the DVD hadn’t yet been released.Someone managed to get hold of a copy, it was couriered up from the company in London and a red carpet duly hired for the full premiere experience. Just yesterday, a six-year-old girl got her dearest wish: a trip round Oxford in a horse and cart.

As well as what Clare calls the “sparkly” experiences, they organise ordinary trips to the pub or to Costa Coffee for very ill or disabled young adults who want a slice of normal life.

'We know more than anyone how your whole life can change in a split second' — ‘We know more than anyone how your whole life can change in a split second’

At the moment there are four children in Helen House, plus one in the Little Room, and another three children waiting for end-of-life care, being visited at home by outreach nurses.There are 160 staff, ranging from doctors to cleaners and fundraisers, a teacher, music therapist, aromatherapist, play specialists and an army of volunteers. It costs £5.1 million a year to run both houses; Government funding makes up 12 per cent, but the rest is fundraising: £1 million comes in from 37 charity shops.Fundraising was challenging last year, possibly due in part to the negative publicity surrounding their founder, Sister Frances Dominica, who faced historic sexual-abuse allegations. She was under investigation but the CPS dropped the case. She denies the allegations, but had to resign from her role as a trustee of the hospice last December.All 54 children’s hospices in the UK have a similar struggle for funding: on average they receive only 21 per cent of their costs from local Government and health commissioners; the rest comes from fundraising. Many hoped David Cameron would introduce more central Government support, as his late son Ivan was cared for at Helen House and he has spoken fondly of the care the family received there. But nothing has happened as yet.

Perhaps it’s because as a society we don’t like to talk about children dying – unlike in past generations where child mortality was common.

“My great grandmother had 16 pregnancies,” says Clare. “They were used to child mortality. But now it’s a subject we don’t like to discuss.”

We adults may have lost this matter-of-fact attitude to death, but young children haven’t. “We’ve heard siblings talking in the playroom. One will say, ‘My sister has died,’ and the other will say, ‘Oh, my brother died,’ and they will debate ‘which one is the deadest’ or who died first,” says Clare. Her own daughters, aged eight and 10, recently had a discussion about how you would find a coffin for a tall man. “You could fold him in half,” suggested one.

Staff find that children at the hospice often know they are going to die, even if adults have not told them. Outreach nurse Shirley Jones recalls a boy of five who was nearing the end of life, but his parents were convinced he didn’t know.

One day he said he wanted everyone to go up to his bedroom and give presents to his brother, whose birthday was in a couple of months. They were puzzled but did it. He died later that day. “Whether they have knowledge or whether they are picking up on cues from family – sensing anxiety, we don’t know,” says Shirley.

Children are often accepting of death (rarely do nurses hear gravely ill children ask, “Why me?”), but teens and young adults are often angry, perhaps because they have more comprehension of what they are going to miss.

When it comes to end-of-life, children often know what they want. One seven-year-old boy who knew he was going to die was determined only to allow staff to give him limited help when the time came. He even had his wishes laminated to the equipment next to his bed.

When the time came, they abided by his wishes, even though his parents must have wanted to try anything to prolong his life. “His mum was incredibly gracious. She was so terribly upset but she did not ask us to carry on. I had so much admiration for her,” recalls Clare.

When a child dies, the impact on parents is all-consuming; bereavement teams at the hospice are often in touch with them years afterwards. “When a child dies, parents have lost the future,” says Clare. “We help them find a new normal, because it’s never the same again.”

By rights, her work should be gruelling and sad, but she loves it. “I’ve only had three bad days in 11 years here – and only one of them was to do with a death. Working here makes me treasure time with my own children. It makes me listen to them, hug them and spend as much time as possible with them. We know more than anyone how your whole life can change in a split second.”

Complete Article HERE!

August 22, 2016August 19, 2016

Talking to Children When a Parent Is Dying

By Ersilia M. DeFilippis, M.D.

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!

August 21, 2016August 17, 2016

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 Ranjana Srivastava

‘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.

“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!

August 20, 2016August 17, 2016

Animal Matters: Veterinarian offers advice for pets’ final days

By Rob Blizard

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.

“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.

“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!