Tag: End of Life Care

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Many kids dying of cancer get intense care at end of life

By Lisa Rapaport

[N]early two-thirds of children and teens with terminal cancer receive intense care at the end of life, often in hospitals and intensive care units, a U.S. study suggests.

Certain patients, including kids under age 5 and teens aged 15 to 21 as well as ethnic minorities and patients with blood malignancies were more likely to receive aggressive care than other children, the study also found.

“The rates of medically intense end-of-life care we found in our study and the disparities we found raise the question: Are we providing a palliative approach to end-of-life care for these patients?” said lead study author Dr. Emily Johnston of Stanford University School of Medicine in California.

“I hope this study makes pediatric oncologists and others taking care of these patients reflect on the end-of-life discussions they are having, particularly with these high-intensity groups,” Johnston said by email. “I also hope it lets families experiencing the loss of a child due to cancer know that there are different ways for that death to happen, so they can think about and advocate for what is best for their child and their family.”

Many adult patients with cancer who know they are dying choose less intense care, and aggressive treatment is associated with worse outcomes for families and caregivers, Johnston and colleagues write in Pediatrics. But less is known about treatment choices for children, Johnston told Reuters Health.

For the current study, researchers examined data on 3,732 patients age 21 years or younger who died of cancer in California from 2000 to 2011.

Researchers examined the intensity of medical interventions at the end of life by looking at how often patients had cardiopulmonary resuscitation (CPR), intubation, intensive care unit (ICU) admissions or dialysis within 30 days of death. Researchers also looked at how often patients had intravenous chemotherapy within 14 days of death and how many patients died inside hospitals.

Overall, 63 percent of patients died inside hospitals and 20 percent were admitted to ICUs.

Children were more likely to receive aggressive interventions at the end of life when they lived closer to a hospital, or when they received care at a hospital that wasn’t a specialized cancer center, the study found.

One limitation of the study is that the results also may not reflect what would happen outside California, or represent more recent trends in end-of-life care, the authors point out. Researchers also lacked data on how patient and family preferences or other factors might have influenced care decisions.

“We do not know a lot about how the end-of-life experience of children impacts on family bereavement outcomes,” said Dr. Joanne Wolfe, co-author of an accompanying editorial and director of pediatric palliative care at Boston Children’s Hospital.

“Some earlier studies have shown that the child’s experience of pain impacts bereaved parents’ long-term outcomes including anxiety and depression,” Wolfe said by email.

Communication is also key, said Dr. Kim Beernaert of Ghent University and Vrije Universiteit Brussel in Brussels, Belgium.

“We know that communication and information about decision making, treatment options, prognosis etc. is very important for how bereaved parents cope afterwards,” Beernaert, who wasn’t involved in the study, said by email.

With the right information and support for parents and families, many children who die in a hospital might be able to die at home instead, said Dr. Amos Bailey of the UCHealth Palliative Care Clinic at the Anschutz Cancer Pavilion in Aurora, Colorado.

“However, it is physically and emotionally challenging to care for a loved one in the home through death, and parents and children may feel more comfortable and safe in a hospital where it is likely they have been admitted before and come to trust and depend on staff,” Bailey, who wasn’t involved in the study, said by email.

“It will be important to understand if more parents or children would want to die at home or out of a hospital if they were supported,” Bailey added.

Complete Article HERE!

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When a ‘good death’ was often painful: euthanasia through the ages

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[T]oday, a primary goal of both movements aimed at care of the dying – palliative care and euthanasia – is to eliminate suffering. These are underpinned by the idea that a good death is a painless death. But it wasn’t always so.

The term “euthanasia” is derived from the Greek for good death, but it only began to be used in a modern and familiar way in the late 19th century. For centuries in Western societies, “euthanasia” referred to a pious death blessed by God.

The means of achieving a good death was set out in the enormously popular ars moriendi (art of dying) guides that offered prayers, attitudes and actions intended to guide the dying towards salvation. This wasn’t necessarily a painless process. Far and away the most reproduced image of good dying was Christ’s crucifixion.

The pain that could accompany dying was seen as punishment for sin and ultimately redemptive: a chance to transcend the world and flesh through imitation of Christ’s suffering. It was also a test of the compassion and charity of friends, relatives and even strangers.

The Christian injunction to minister to suffering meant visiting and caring for the dying were seen as communal duties. Children as well as adults were expected to offer physical and moral support to those who were gravely ill.

Doctors did not typically attend the deathbed. They did not have an obvious role in the central spiritual business of dying, but nor were they particularly associated with the mitigation of suffering.

Indeed, in the pre-anaesthetic era, doctors were more likely to be associated with the infliction of pain. Surgery, of course, was excruciating, but other now infamous “heroic” remedies (such as blistering, excessive bleeding and the application of caustic chemicals to the skin) were based on the belief that pain had healing properties and involved doctors deliberately inducing it.

In the 19th century, pain began to be seen as a discrete and aberrant physiological phenomenon. Both dying and suffering were increasingly medicalised. Doctors gradually took over from the clergy and family as carers of the dying.

At the same time, the word “euthanasia” took on a new meaning. It began to refer to this new medical duty to assist the terminally ill – but not to hasten death.

In the wake of the mid-century revolution in anaesthetics and aided by innovations such as the hypodermic syringe, doctors began to “treat” the dying with painkillers as well as prayers.

In 1870, Samuel Williams, a Birmingham businessman and amateur philosopher, proposed a more definitive form of this new medical treatment for the terminally ill. In an essay called Euthanasia, published by the local Speculative Club, he wrote:

That in all cases of hopeless and painful illness, it should be the recognised duty of the medical attendant, whenever so desired by the patient, to administer chloroform or such other anaesthetic as may by-and-by supersede chloroform – so as to destroy the consciousness at once, and put the sufferer to a quick and painless death.

Williams sparked a debate that has waxed and waned but never gone away. But how had this come to look like a good way to die?

Changing meanings of pain

In 1901 psychologist and philosopher William James wrote of the “strange moral transformation” that had taken place regarding attitudes to pain:

It is not expected of a man that he should either endure it or inflict much of it, and to listen to the recital of cases of it makes our flesh creep morally as well as physically. The way in which our ancestors looked upon pain as an eternal ingredient of the world’s order, and both caused and suffered it as a matter-of-course proportion of their day’s work, fills us with amazement.

Historian Stephanie Snow observes that as anaesthetics and other methods of pain relief became available in the 19th century, people began to see pain – the experience but also the sight of it – as more damaging and demoralising.

A new generation of comfortably off Victorians who considered anaesthesia commonplace could no longer stomach physical suffering. Now pain was something that could not just be eliminated but struck as cruel, unusual and degrading: “an alien force which undermined man’s very humanity”.

Dying and suffering became things from which people, particularly children, should be shielded.

A modern paradox

Medical methods aimed at eliminating the pain of the dying process developed as the fear of death – a fear that for centuries dwelt on the post-mortem horrors of hell – began to centre on the horror that could precede it.

Paradoxically, this fear arose and gained momentum as most people in Western cultures became increasingly insulated from such suffering. As mortality declined, more people died in hospital under the care of specialists, and doctors’ ability to control pain advanced in ways previously unimaginable.

This very modern anxiety can be historically tracked from Williams’s 1870 proposal to the assisted dying bill soon to be debated in the Victorian parliament.

Our ancestors would be amazed.

Complete Article HERE!

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When life is coming to a close: three common myths about dying

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[O]n average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.

We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.

Myth 1: positive thinking can delay death

The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.

Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.

For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.

Myth 2: dying at home means a good death

The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.

The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.

It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.

Myth 3: pushing on with futile treatment can’t hurt

A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.

There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.

The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.

Complete Article HERE!

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The Painful Choices End-of-Life Brings for the Caregiver

by Kay Bransford

Caught off guard

[T]he final days for both my mom and dad were unexpected. When we got their initial diagnoses in 2012 — Alzheimer’s for dad and vascular dementia for mom — we were told they could live for a decade or more.

Early on, I fought to be their caregiver. Due to the nature of their conditions, they just didn’t recognize how many issues they had managing their day-to-day lives. Eventually, they accepted my help. I adapted to being the primary adult family caregiver and absorbed the additional responsibility to advocate for their needs.

I wasn’t prepared for how hard it would be to make decisions about life and death for my parents. Thankfully, I was very clear on their wishes. I spent most of my adult life living near my parents and visited them two or three times a week. On many occasions, as my parents were watching or caring for their own parents, they would comment on how they would like to be treated.

Over the years, my mom must’ve told me at least a hundred times that “If I end up like my mom, put a pillow over my head.” Obviously, I couldn’t do that, but it reinforced the fact that she wanted quality of life, not just life. My dad wasn’t as conversational about his wishes, but when he would share what was happening to colleagues and friends, we would discuss how our family might face the same situations. In those moments, I also learned what was important to him.

In 2013, after my parents moved into an assisted living community, life and caregiving became much easier, at least for a while. The biggest issue was handling the multitude of calls to come visit. Sadly, my parents never remembered when I visited. They would often call me while I was on the car ride home to ask when I was stopping by.

What’s wrong with dad?

In the spring of 2013, I noticed that my dad was starting to drool, and on some visits, his speech was a little garbled. The staff doctor at the assisted living community didn’t find anything unusual and felt that this was likely related to the Alzheimer’s. I wanted to be sure, so I set up an appointment with a specialist.

The specialist didn’t find anything out of the norm. My parents had dentist appointments coming up, so we decided to wait and see whether the dentist noticed anything unusual.

Unfortunately, the appointments my parents had with the visiting dentist came and went. When it came time to see the dentist, they’d both declined to be seen. They were put back on the dentist’s wait list, but I didn’t want to go that long without conclusive information about dad’s symptoms.

Instead of waiting for the dentist’s appraisal, I requested a swallow consult with the community’s speech pathologist for dad. I was surprised to learn that my dad’s tongue seemed to be paralyzed. My dad was immediately referred to the doctor at the assisted living community. The community doctor found a growth on the back of dad’s tongue and suggested that we see a specialist for mouth cancers right away.

Within a few days, the specialist confirmed that dad had a tumor. The tumor tethered his tongue, which prevented him from being able to move it to swallow or speak clearly. We learned that dad had options for treatment, but they would be extensive: chemotherapy, radiation, and a feeding tube. Thankfully, one of my brothers was able to come to town and help me figure out how to best help our dad.

Deciding what comes next

Two months before the doctor diagnosed dad’s tumor, our parents celebrated their 60th wedding anniversary. As their children, we were proud that we could keep them together as they were both living with similar stages of different types of dementia. There aren’t many options for couples who both need memory care.

Although they were together throughout dad’s new diagnosis, we knew that our mom didn’t understand what dad was facing. What we did know was that they were better as a pair, and we wanted to see if we could get them more time together. We were raised to put up a fight for the things we wanted, and we were prepared to go into battle for dad.

Getting his teeth cleaned by a specialist was the first step in getting treatment for his tumor. In order to get his teeth cleaned, he had to get cleared by a cardiologist for the procedure. This is because they would have to sedate him during the teeth cleaning.

It wasn’t until this meeting with the cardiologist that we realized just how weak he was. During the appointment, dad fell asleep on the examination table, something he would do during the many appointments to come.

We realized that if we moved forward with treatment for the tumor, it would create even more discomfort for our dad. Due to the nature of his dementia, he was already experiencing discomfort in his daily life. It seemed senseless to add yet another layer of suffering when recovery from the tumor wasn’t guaranteed.

We understood that it was time to meet with the hospice doctor to discuss palliative care and make dad as comfortable as we could for the rest of his life. Still, it was hard for us to absorb the reality that our father, a multiwar veteran, was going to die from a cancerous tumor on his tongue.

Dad’s tumor was diagnosed on August 27, 2013, and on September 27, 2013, he passed away in a hospice center. I’m thankful it was swift, but it happened so fast that I was thoroughly in shock, as were we all. Once we realized how much pain he was in, we were happy that he didn’t linger.

For whatever reason, my mom, siblings, and I decided we wanted one last family picture of us surrounding dad’s body. I’ve never seen 5 people look so forlorn in any photograph before or since.

Living with the loss

The coming days, weeks, and months were incredibly difficult to manage. Not only was I grieving for my dad, I was second-guessing my ability to be the family caregiver. I was also trying to figure out how to help my mom who, due to her dementia, couldn’t remember that her husband died.

I am now thankful that we took a picture with dad in his hospice bed — it turned out to be something I could share with my mom. Although many people will tell you to never remind someone with dementia about the loss of a loved one, I felt that it would be more harmful not to tell her.

My mom would spend her time roaming around the community looking for dad and grew increasingly anxious when she couldn’t find him. I wanted her to be able to grieve his loss. When I visited, I would bring pictures of dad, share a happy story about him with mom, and mention how much I missed him.

During the first month after dad’s death, mom became very combative with the other residents; before long, she was getting into physical fights with other people in the community. This was a new behavior for her, and it was unlike my mom to be physical.

I was called in to meet with the community’s director who told me we needed to find a way to help my mom manage better in the community or she would have to move out. They suggested we hire a personal care assistant (PCA) to help her manage her day. We realized that it was time to start looking into a community specifically for people who need memory care.

Helping mom adjust

We immediately hired a PCA after meeting with the community’s director. Due to her dementia, mom already had some issues with paranoia. Unfortunately, bringing a PCA in only made mom more paranoid. She felt like someone she didn’t know was constantly following her.

Mom was generally suspicious of suggestions from someone she didn’t know well. This meant that she had a hard time connecting with most of the residents and staff in her community. Without dad, she was truly alone much of the day.

I also hired an aging life care manager to help me find the best memory care community for mom. She helped me understand and recognize the key attributes of a good memory care community.

We needed a community with:

  • scheduled activities that my mom would enjoy
  • active reminders about upcoming activities or events so my mom wouldn’t miss out
  • a standardized menu so that mom didn’t have to figure out how to piece together a menu of her own
  • community cues to help mom recognize how to get to her apartment

Assisted living communities are designed to help people navigate physical limitations in order to complete daily functions and activities. They don’t offer activities designed for people with memory issues, and they aren’t staffed to deal with the types of behavior, like paranoia, that might present in someone with dementia.

Before we could finalize the details of mom’s move, she had a major setback. She had been complaining about back pain, so her doctor prescribed her Tramadol. Mom ended up on bedrest and behaved as if she were on hallucinogenic drugs.

We later found out that the medication caused this reaction because of the type of dementia that she had. Her doctor said that this wasn’t uncommon, but it wasn’t something we were prepared for. The possibility of such a reaction was never mentioned to me when she was receiving her prescription.

It took nearly 3 weeks for the drug to work its way out of her system. She spent so much time in bed recovering that she became weak and unsteady. Several months passed before she was able to walk on her own again.

Once mom was stable, we moved her into a memory care community. We moved her on January 17, 2015. We knew the transition would be difficult. Often, for people with dementia, switching residences can result in a recognizable decline. Although she adapted quite well, she had a fall that landed her in the emergency room after only a few months in the new community.

She was unable to fully recover from the fall and could no longer walk unassisted. To make matters worse, mom would never remember she wasn’t steady on her feet. She would try to get up and go whenever the notion struck her. To keep her safe, we brought a new PCA back on staff.

Mom lived in the memory care community for nearly a year. We were lucky to have found a PCA that doted on mom and that mom trusted. She would do mom’s hair and nails and made sure she was active and engaged in activities. It was nice to have someone I could contact to know how mom was doing on a daily basis.

Saying goodbye to mom

In December 2015, mom tipped over while washing her hands. She never hit the ground, but she complained of hip pain, so she was taken to the ER. When I arrived, I immediately recognized the significance of her injury.

Sometimes, when bones grow frail, a simple twist is all it takes to break a hip. While they took mom to X-ray, I found a private restroom and sobbed. I knew that elderly women who break a hip are at an increased risk of dying within a year of the incident.

When I met with the orthopedic surgeon, she confirmed that mom’s hip was broken. She told me that she couldn’t operate until I lifted mom’s Do Not Resuscitate (DNR) order. I was taken aback by the surgeon’s request.

When I asked her why, she said that they’d have to put in a breathing tube. I told her that if my mom died on the table she wouldn’t want to be brought back to a life with dementia. The surgeon repeated that to make mom comfortable, we should operate, and to do that, I needed to lift the DNR order.

I called the aging life care manager back in and a geriatric doctor to help me navigate my choices for mom. The geriatric doctor told me that mom most likely wouldn’t be strong enough to qualify for surgery. A few tests had to be run before we even needed to worry about the surgeon’s request.

The first test identified a heart and lung issue, eliminating the option for surgery. Mom’s body just wasn’t strong enough, and it was easy to see how much pain she was in.

She was alert even after four courses of morphine. She didn’t really understand what was going on. And at some point during her stay at the ER, she had a small stroke. My mom no longer recognized me, and she was unable to remember that she had children.

It had become clear that our only choice was to move mom into hospice care. Her health was fading fast, and we wanted to make her last days as comfortable as possible. We moved mom back to her community where she had 24-hour support and hospice care. I called all of my siblings and they scheduled one last trip to see mom.

Over the next week, mom mostly slept. Every day, I’d arrive with lotion and rub her feet. By the end of each visit, I would end up crying at the foot of her bed. I told her how much I would miss her, but reminded her that dad was patiently waiting for her to join him.

When I visited her on Christmas Day, her breathing was jagged. I knew she didn’t have much longer. The memory community nurse called at 5:35 p.m. to report that mom had passed away. Even though I felt it coming, I was still stunned. Thankfully, my husband and children were with me when I received the news. They were able to take me to see mom one last time and say my goodbye.

Learning to live with my decisions

If I knew how things were going to progress, I feel like I would have made many different decisions throughout my caregiving journey. It’s hard not to second-guess the decisions that I made during my time as caregiver.

A wonderful social worker told me that I should forgive myself, because I made the best decisions that I could with the information I had at the time. I’m still reminding myself of that. I often share this advice with other caregivers who feel the same remorse about their caregiving journey.

A year has passed, and I’m still learning how to adjust to life after caregiving. I was told quite often to be kind to myself during my journey. Now that my family caregiving journey is over, I believe that this is the best advice I was ever given. I hope that after reading about my experiences, you can take this to heart and find peace on your journey.

Life after caregiving

While I was caring for my parents, I started to build a part-time business focused on helping other caregivers. I wanted to help other caregivers navigate challenges like the ones I was facing — managing doctor’s appointments, getting finances in order, and maintaining a second home.

This part-time business would become MemoryBanc. For several years, I balanced work by limiting the number of clients I helped so that my parents would always be the priority. When I was grieving my mom’s passing, I realized how much I enjoyed being able to help her lead the life she wanted.

After a few months, I started to take on more clients. It felt good to be able to put my caregiving journey behind me, but also to use what I learned to make me a valuable resource for so many other families. While I still have moments of sadness, I’ve been able to focus on the great lives my parents lived instead of dwelling on the last few years we had together. I’m still adjusting to my new normal.

Complete Article HERE!

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When to Consider Hospice Care

According to a new study, many people wait too long to get special end-of-life care

By Lauren F. Friedman

[M]any patients near the end of their lives wait too long to enter hospice care, reports a new study published in the Journal of the American Geriatrics Society.

People who put off hospice care—in which attempts to cure a disease are usually stopped and replaced with treatments just for pain and suffering—might spend months in and out of hospitals, with their families struggling to take care of them. Hospice is specifically designed to address such issues with drugs and other interventions, which can increase patients’ quality of life toward the end of life.

“At some point, patients and their families and doctors realize that hospice is appropriate, but that happens perhaps later than it should,” says study author Thomas Michael Gill, M.D., a professor of medicine, epidemiology, and investigative medicine, and the Humana Foundation professor of geriatric medicine, at Yale University. “When folks are referred to hospice only in the last days of their life, it’s difficult to have a meaningful benefit.”

For nearly 16 years, Gill and a team of researchers from the School of Medicine at Yale University followed 754 people who were all over 70 years old when the study began. Even though more than 40 percent of the 562 patients who died during the study entered hospice care during the last year of their lives, the median time spent in hospice was less than two weeks.

Many of their most debilitating symptoms—including pain, nausea, depression, and shortness of breath—decreased substantially only after hospice began. That means many patients might have been suffering needlessly for months, says Diane Meier, M.D., the director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at The Mount Sinai Hospital.

Health crises, emergency-room visits, and hospitalizations can become routine toward the end of life, and “that is a very distressing and stressful experience for patients and family members,” says Meier. “Remaining in your own home [something hospice makes possible], a familiar place with familiar people, is safer and offers better quality of life.”

Here’s what you need to know about hospice care, and how to know when it’s time to begin considering it, for yourself or a loved one. 

What Is Hospice Care?

Hospice is a type of end-of-life care where the focus shifts from medical interventions aimed at a cure to palliative care, in which comfort and support for patients and their families are the main goals. It generally includes medical and nursing care as well as counseling and social services. 

According to the National Hospice and Palliative Care Organization, a specialized team—working in a patient’s home, a nursing home, or a hospice facility—has been trained to treat “all types of physical and emotional symptoms that cause pain, discomfort and distress.”

Hospice has been covered by Medicare since 1982 (though it has become more widely used only recently).

To initiate the hospice benefit, two physicians (or other healthcare providers) have to certify that a patient is terminally ill with less than six months to live—something that can be difficult to predict in many cases, say Meier and Gill. Patients can and do leave hospice at any time, because their condition stabilizes, for example, or because they want to pursue curative treatments again. Hospice care can also be extended beyond six months.

“Many people are fearful that if they choose hospice, they won’t be able to return to mainstream medicine should they improve or new treatments become available—that’s not true,” says Meier. “Hospice is not a one-way street.”

And some evidence suggests that hospice patients actually live just as long or even longer than similarly ill patients who are not in hospice.

Yet the persistent misconceptions about hospice, says Gill, may be part of what keep people from seeking it out sooner.

When Is It the Right Time for Hospice?

For people with terminal conditions (which includes not only some cancers but also dementia, terminal heart disease, lung disease, frailty, and more), there should be an ongoing discussion taking place with their doctor about their goals and priorities, says Gill—ideally long before hospice is being broached.

“Often patients will say ‘I’m more interested in the quality rather than the quantity of my remaining life,’” he says, and that can help inform future discussions about end-of-life care.

But if you have not already discussed the possibility of hospice with a doctor, either for yourself or a loved one, there are two key signs that suggest it might be time to broach the topic for someone nearing the end of life, Meier says.

First, if a patient is having increasing difficulty taking care of themselves and struggling with basic tasks such as walking, getting out of a chair, bathing, dressing, and using the toilet, hospice care is designed to help with all of those things.

Second, symptoms such as severe pain, shortness of breath, hopelessness, depression, and profound fatigue are all treatable in hospice, says Meier. In fact, “most of them can be improved or eliminated,” she says.

In the end, “a patient’s trajectory is most important,” says Gill. “In terms of daily functioning, are they heading downhill as opposed to being relatively stable?”

These conversations can be difficult for patients, their families, and their doctors—which is why people often put them off until the last moment, sometimes sacrificing quality time at the end of life for dubious interventions or unnecessary hospitalization.

But the benefits to considering hospice care sooner are clear. A patient with terminal cancer, featured in a 2014 Consumer Reports article, called entering a hospice program—nearly nine months before he died—“one of the best things that’s happened to me in the last I don’t know how many years.”

“It’s challenging to have honest discussions with patients and families about death and the dying process,” says Gill. “But leaving the conversation until the very end makes it more difficult.” 

For more information, see Consumer Reports’ guide to caregiving and end-of-life care.

Complete Article HERE!

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Walking hand in hand: Hospice workers accompany dying people

Lisa Sartin

By Jerrilyn Zavada

[A]s a nurse, Lisa Sartin has been interested in end-of-life care.

Sartin began her nursing career 25 years ago and has worked in oncology, critical care and as a nursing supervisor.

But in the last year, working as a hospice nurse for OSF Home Health in Ottawa, she found her niche.

“When I was working with oncology patients, I was just out of nursing school and loved it, but it was a little stressful,” Sartin said. “I was 22 years old and thought I could fix everything. Hospice was something I was just always interested in. This opportunity was available and I tried it and loved it.”

Sartin and the rest of the hospice care team, which includes skilled nursing, a social worker, certified nursing assistants and the chaplain/bereavement coordinator, work closely with one another to provide mental, physical and spiritual support for dying people and their families.

“From the minute they are admitted, each patient is always treated individually,” Sartin said. “Each patient has individual needs, each family has individual needs. We assess where they’re at in the grieving process, acceptance process and develop a plan of care from there.”

Sartin said the frequency with which the team visits the patient and family depends on the illness. A key responsibility of the nursing staff is education, especially on pain management and medicine administration.

“We see them a couple times a week,” she said. “If they are more critical, we see them more often. We go out and we’re there for the whole family. We’re caring not just for patients but for the whole family. You develop very close friendships and relationships with them.”

At a time when emotions can be all over the map for everyone involved, Sartin takes special care to be honest with the patient and their family about what they can expect.

“I tell them I will always be honest with them and that I can’t promise them any time, but what time there is I will make comfortable for them,” she said. “Everyone is different. Not everyone can handle the same conversations at the same time. By the time of the transition, families and patients are very educated and ready. Some patients want to be educated right up front and others want to be educated as they’re going through the process. All are educated the same, just at different rates.”

When death is imminent, Sartin says most people are prepared, but she’s not sure anyone is ever ready.

“Every family is different,” she said. “They’re prepared to see the family member not suffer anymore. I’ve been present for many passings. As a nurse our job is to be a support system. There are many times when we get in the car and we cry, but our priority is to be a support and be with them at the time of death.”

Although hospice care isn’t for everyone, those who do work with dying people and their families find a great personal reward from the task. Sartin says hospice workers have to be caring and compassionate, not only for people, but also for the line of work they are doing.

“Hospice is very rewarding. In nursing you want to fix everybody,” she said. “Sometimes helping means not fixing. It is rewarding knowing you have helped a patient and family through what is the most difficult time in their life. You’ve given comfort and know you’ve made the passing as peaceful as it can be. I’m rewarded every day by the friendships I make with the families and the patients.”

Each member of the hospice team brings a great deal of professional work ethic. Still, the nature of the job is they are losing someone with whom they have formed a relationship.

“You become very close to them,” Sartin said. “With each patient you lose, you are losing a friend. That part is difficult. But the benefits and rewards you get in the job very much outweigh that part of it.”

Throughout the process, Bill Clark, bereavement coordinator, is present for the dying patient and the family to help with the grieving process.

“I visit the patient or family as often as they request me,” Clark said. “Providing active listening is primary. By listening, I am able to discern their needs and concerns about dying. The bereavement coordinator’s presence, spiritual support and prayers are what they most request.”

After the patient’s death, the bereavement coordinator continues care for the family for 12 to 13 months in various ways. Once a year, a memorial event takes place for families who have lost a loved one in the previous year.

Clark, also an ordained minister, provides a calm, pastoral presence “by representing the love of God and the hope of heaven and eternal life He has promised through His Son Jesus.” He also offers prayers, which he says hardly anyone declines.

“One of my important assignments is to ascertain their religious background and even offer to contact their own pastor, priest, rabbi or any other religious clergy,” Clark said. “I never attempt to replace someone’s church or clergy, but simply come alongside for additional spiritual support.”

During his years as a hospice chaplain, Clark, says he is surprised at how most people are able to work through a lot of their own issues within themselves.

“Their own faith background helps them,” he said. “They often need a sounding board for their thoughts and feelings, which the chaplain can provide. I have discovered that people with faith have more peace in the midst of the dying process than those who do not … Many questions are resolved in a surrendered life and future to God through prayer.”

Complete Article HERE!

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The Brutal Truth Of Living With A Terminal Illness


Brought to you by Stop The Horror
Stop The Horror is a five-minute short film that confronts viewers with a harrowing retelling of the true events surrounding one man’s traumatic death.

by Sam Langford 

Kass Hall is a law student with a background in art and design; she lives with her husband and their pug called Elvis. She describes herself as a sister, a daughter, an aunty and a friend. 

She has been living with cancer for 27 years.

“I’m getting good at defying the odds, but I’ll never be in remission,” Kass says. “I’ll always be under my oncologist and surgeon’s eagle eyes, and I know that each hurdle, big or small, is a hurdle closer to the finish line.”

Impending death is not the kind of thing you adjust to. Despite the number of times she’s come close, Kass, now 39, is frank about being scared. She is under no illusions about what dying is like — she has seen “many, many friends, from children to older people, dying slowly and painfully.”

“I’ve been in the room in the final moments of life, and though we do our best to make people ‘comfortable’, it’s a situation I do not want to find myself in — for my own sake and that of those who love me,” she says.

She hopes that finish line isn’t soon. But in the event that it is, she wants a say in drawing that line.

This is how Kass has come to be an advocate for voluntary assisted dying legislation — her experience leaves her pretty uniquely placed to clap back at people opposed to it. With new assisted dying legislation proposed in Victoria at the moment, now is a particularly pressing time to persuade people of the bill’s importance.

“I have always liked the idea that, when I reach ‘my line’, I could choose to end my own pain. Watching someone you love die is one of the worst experiences a human can endure, and I imagine being the person dying is even worse.”

It’s an experience explored in the recently released film, Stop The Horror. A graphic five-minute short directed by Justin Kurzel, the film tells the true story of a man who dies over a period of three weeks, exploring what he and his family are forced to deal with.

Getting Diagnosed

Kass’s first diagnosis was in 1990, when she was twelve. The kind of cancer she has is incredibly rare, and was hard to pin down for a long time — as she wryly puts it, “what they thought it was then is not what they think it is now”.

That first diagnosis led to surgery and chemotherapy. On five separate occasions, her parents were called to the hospital to say goodbye. And yet, against all odds, Kass survived, though not without complications. “At that time I lost part of my stomach and duodenum [the first section of the small intestine],” she says. “The chemo left me infertile and with a heart condition, though thankfully my heart has remained strong.”

These complications have been multiplying steadily ever since. In 2000, Kass lost a kidney. In 2008, her thyroid. In 2011, the cancer returned to her stomach and liver. It was only in 2012 that her doctors discovered she had a genetic defect that was causing the tumours to return.

That was the moment, Kass says, when realisation hit. “This disease was — barring the unforeseen — what would kill me”.

Here’s the cruel thing about this genetic defect: in addition to all but guaranteeing the cancer’s return, it makes Kass ineligible for an organ transplant. And while so far it’s been possible to combat the resurgence of tumours with surgery, she’s keenly aware that things can’t continue this way forever.

“There’s going to come a time where surgery is no longer an option, and that’s when I start the slow process of dying.”

“The idea of dying anytime soon is not one I am comfortable with,” she says, “but who is, though?” She’s coming up on her 40th birthday in January, a milestone her oncologist has been telling her for years would be a “great outcome”.

Why Voluntary Assisted Dying Legislation Matters

Assisted dying has always been controversial, often for reasons Kass is keen to see us move past. Concerns about younger people — not children, but adults in their late teens and early twenties — having access to the option of assisted dying are, to Kass’s mind, utterly dismissive of terminally ill young people’s experience.

“There is no difference in older people and younger people making this decision,” she says. “If anything, for younger people the decision is harder because we think about what we may miss out on — weddings, children, travel.”

Kass says arguments that say young people with terminal illness don’t have the necessary perspective or clarity to decide to end their lives “seek to debase a person’s autonomy and thought process.”

“It’s designed to second guess a person. No one has the right to do that. Anyone who said that to me would probably not like the response they get from me.”

As for those who argue that choosing to die is a selfish act, Kass says her response “probably isn’t fit to print”.

“What I can say is that what other people think is not my problem. They are not living my life, they’re not walking in my shoes. Everyone has an opinion, but my life deals in facts. What others think about my choices, especially if they’ve never experienced my situation, is of zero consequence to me”.

Some of the most legitimate and important critiques of voluntary assisted dying legislation, though, come from people who have experienced Kass’s situation, or situations like it. These campaigns are run by people with terminal illness or life-threatening disabilities who are concerned that assisted dying legislation will needlessly kill many people through a subtle combination of pressures. Things like, for example, the feeling of being a burden on close family or medical services.

These are arguments Kass is willing to engage on — she says she’s aware of and understands the campaign in question, but thinks the legislation proposed by the Victorian Government includes adequate safeguards, including a multi-step process she hopes will catch any instance of family or external pressure.

“To my mind,” she says, “that is why patient autonomy is the key. At the end of the day, what family members think and what their needs are is not what this is about — it is and should always be about the primary patient. If the primary patient has not requested and been through the voluntary assisted dying process, then it shouldn’t be available.”

“And any family member that puts any pressure on a person who is dealing with illness or disability should find the map to hell and go there. There are so many people in the disability community and those with long term illness who have so much to contribute and who are outstanding members of society. Having an illness or disability doesn’t diminish us as people.”

Reaching The Finish Line

In Kass’s case, she knows her husband will support her decision if she reaches her line. She hopes that won’t be soon — she wants to grow old with her husband, see her nieces and nephews grow up, have a full legal career. For the time being, she’s optimistic.

But even on good days, the line is there, and Kass says that when she hits it, she has “no hesitations” about what she’ll do.

“I have no interest in suffering unnecessarily,” she says. “It will be my decision.”

“I respect that this won’t be for everyone. I just feel that a choice for those of us who do seek to end our own suffering should be given to us. We all have our own paths in life, and should have as much choice made available to us as possible.”

Complete Article HERE!