Tag: End of Life Care

Posted on

Doctor Considers The Pitfalls Of Extending Life And Prolonging Death

By Fresh Air

[H]umans have had to face death and mortality since since the beginning of time, but our experience of the dying process has changed dramatically in recent history.

Haider Warraich, a fellow in cardiology at Duke University Medical Center, tells Fresh Air‘s Terry Gross that death used to be sudden, unexpected and relatively swift — the result of a violent cause, or perhaps an infection. But, he says, modern medicines and medical technologies have lead to a “dramatic extension” of life — and a more prolonged dying processes.

“We’ve now … introduced a phase of our life, which can be considered as ‘dying,’ in which patients have terminal diseases in which they are in and out of the hospital, they are dependent in nursing homes,” Warraich says. “That is something that is a very, very recent development in our history as a species.”

Prolonging life might sound like a good thing, but Warraich notes that medical technologies often force patients, their loved ones and their doctors to make difficult, painful decisions. In his new book, Modern Death, he writes about a patient with end-stage dementia who screamed “kill me” as a feeding tube was inserted into his nose.

“This is probably one of the encounters that I had in residency that I have been unable to shake from my memory,” Warraich says. “I think if you ask any physician, any nurse, any paramedic, they’ll have many such stories to tell you.”

Interview Highlights

On the importance of having a healthcare proxy, living will and advanced directive

One of the biggest problems that we face in not only modern society, but in societies of olden times as well, is that people have always been very afraid to talk about death. In many cultures it is considered bad luck to talk about death and it is thought to be a bad omen. I think to some extent that extends to this very day. But … I think having a living will, having an advanced directive, or perhaps most importantly, having a designated healthcare proxy, someone who can help transmit your decisions to the team when you’re not able to do so, is perhaps the most important thing that we can do for ourselves as patients and as human beings.

On giving CPR and knowing when to stop giving CPR

One of the things about CPR, Terry, is that almost everyone in medicine knows how to start CPR, when to start CPR, really what to do in CPR under even complex situations, but the one thing that almost no one really teaches us, and there are no guidelines for, is when to stop CPR. I think in some ways that is one of the biggest challenges that we in medicine face all the time. …

I was actually working in the hospital last night and it was about 3 in the morning and I was called by one of my other colleagues who was another cardiology fellow, he asked me, “Haider, I need your help. I have a patient that we are doing CPR on,” and he wanted some help from me. So I walked over to the intensive care unit, and the patient was in her 60s. … There was an entire team in the room doing chest compressions on this woman, and they had been doing it for an hour and a half at that point, much, much, much longer than most CPRs last. …

At the same time while this CPR was ongoing, the patient’s family member, her daughter, was outside the room, and she was crying. … Even though we could give her all the information … that wasn’t perhaps what she was looking for, because what we were asking her to think about or to do was one of the hardest things anyone has to ever bear, which was, “Do you want us to stop CPR?” And that’s the type of thing that I don’t think any of us can ever prepare for, especially when it’s our parent that’s involved.

On why he wrote a book about dying

I really wanted to find answers to some very, very basic questions, like what are the implications of the sort of life extension that we have achieved? What is the role of religion, not only a patient’s religion but a physician’s religion when it comes to dealing with the end of life? How is social media affecting how people experience the end of life? …

So many times I’ve found myself in the room where there are people who were so much more experienced in life than I was, yet knew so little about death and dying. And so I wanted to write a book so that people could go into those really, really difficult places and feel like they’re armed with information, that this isn’t a completely foreign territory for them and that in some way could help them navigate and deal with the sort of difficult situations that lay ahead for them.

Dr. Haider Warraich has written medical and opinion pieces for The New York Times, The Wall Street Journal and The Atlantic.

On the possible repeal of the Affordable Care Act

It is very unfortunate that health is so politicized in this country, because it doesn’t have to be. Health and wellness aren’t red or blue, and they shouldn’t be, but unfortunately that is where we are. I hope that when policies are being enacted in DC, patient’s voices, those who have benefited from the ACA, those who have gained insurance, those voices are not lost in the midst of all of this political activity.

On immigrating to the U.S. from Pakistan

I came to the United States in 2010 and [until now] have only lived in an America in which Barack Obama was the president. I think in some ways Trump’s victory has really shaken me, because of how invested I was in the idea that America is a special place, it’s a truly multicultural society. And I’m still trying to understand, I think like so many others, just exactly what happened. Especially as a writer and as a physician I’ve tried to separate myself from my identity as a Muslim. I’d rather be known as a physician/scientist/writer who happens to be Pakistani, rather than a young Pakistani Muslim immigrant who happens to be a doctor and a writer, but I don’t know. Given how things are changing, I’m not even sure if I’ll be able to set that narrative for myself. That’s a scary thought — to live an identity that is so politicized even when you wish for it to not be.

Complete Article HERE!

Posted on

How do you want to die? Write it down.

By

[M]ost Americans are unprepared for the worst to happen—an accident or an unexpected illness that leaves them brain dead, but still alive.  That’s what happened to Terri Schiavo, a young woman who became comatose after suffering a heart attack in 1990.  

Schiavo was kept alive by a feeding tube for fifteen years.  During that time, her husband tried to withdraw the feeding tube, but was adamantly opposed by Schiavo’s parents, Congress, and President George W. Bush.  After a highly publicized legal battle, the feeding tube was finally removed and Schiavo died two weeks later.  This protracted battle might have been avoided, if Terri Schiavo had completed a document known as an advance directive.  

Post-Terri Schiavo

81-year old Leah Brueggeman wants her intentions made clear, in the event she is unable to express her wishes for medical treatment.  She and her husband live in La Crosse, Wisconsin and they completed their six-page advance directives in 2009 with the help of an attorney.  “We don’t want to be put on feeding tubes indefinitely,” says Leah. “If there’s no chance of recovery—just let us go!”

The advance directive is a legal document that has two parts.  One specifies the kind of medical care a patient wants if he is no longer competent.  For example, CPR if his heart stops, feeding tubes if he can no longer eat on his own, IV fluids for hydration.  Or he can refuse any or all of these interventions.  The patient also designates someone trusted who can make medical decisions on his behalf if he is unable to.

The Schiavo case brought more public attention to the importance of having an advance directive.  But that interest quickly receded.  Today, only a third of all Americans have completed an advance directive. Dr. Ruma Kumar, a palliative care specialist and regional medical director with Kaiser Permanente of Northern California, says that many patients are too afraid to plan for their future health care and their doctors are often reluctant to bring up planning.  According to Kumar, doctors don’t have the time to engage their patients in extended end-of-life conversations.  “Or if you bring up planning, you might make the patient nervous that you’re giving up hope in their treatment plan,” she says.  

Limits of advance directives

But even if an advance directive is completed, a patient’s stated wishes may not always be carried out.  The document can get overlooked, misplaced, or ignored by medical staff, as Katy Butler found out.  “Hospitals are a world of their own,” says Butler. “It’s like a foreign subculture.  And once you enter into that system, it can be very, very difficult to get your wishes put into practice.”

Butler is a Bay Area journalist who wrote the best-selling memoir “Knocking on Heaven’s Door:  The Path to a Better Way of Death.”  In her book, Butler described her own difficult experiences, trying to get her father’s advance directive enforced.  She recalls going up against a wall of resistance when his physician refused her request to withdraw treatment for her dying father.  

Butler’s father was 79 when he suffered a major stroke in 2002, which caused brain damage and dementia. He had a weak heart and Butler says he probably would have died of natural causes within two years following the stroke.  But his pacemaker kept him alive for the next six years.  In her memoir, Butler says that the extra years of life caused him great misery.  “The tipping point had come,” she writes. “Death would have been a blessing and living was a curse.”

As her father’s designated medical agent, Butler went to his cardiologist and requested that the pacemaker be turned off.  “The doctor not only refused to cooperate—he really treated us as if we were some kind of moral monster,” Butler says. “Technically according to the law, you have the right to refuse any form of medical treatment and you have the right to request the withdrawal of any form of medical treatment.  But you’ve got an advanced device like a pacemaker—you don’t know how to turn it off.  You don’t know where to go to get someone to help you turn it off if your cardiologist is saying no.”

La Crosse, Wisconsin—the best place to die in America

One place Katy Butler might have gone for help was La Crosse, a small city on the Mississippi River in Wisconsin.  La Crosse is known for its steamboats, Wisconsin cheese, and its excellent end-of-life care.  La Crosse is the home of the Gundersen health system, ranked in the top one percent of hospitals nationwide. An astounding 96 percent of all La Crosse residents who died last year had completed advance directives. That figure far exceeds the number of people who complete advance directives in the Bay Area and the rest of the country.  

Dr. Bud Hammes, Gundersen medical ethicist

Dr. Bud Hammes, a medical ethicist at Gundersen, led the effort to improve end-of-life care in La Crosse. The key to success, says Hammes, was creating a supportive culture of person-centered care that honors a patient’s goals and values.  “It isn’t just about training a few people to have these conversations with patients,” Hammes says. “It’s actually about changing the culture of the health care system and ultimately of the community.”

To change the culture at Gundersen, Hammes convinced hospital administrators in the late 1980’s that end-of-life care needed to be given higher priority.  An electronic medical record system was created to document patient preferences.  That way, advance directives are easily accessible and can’t get lost.

End-of-life conversations and advance directives are now part of the hospital’s routine practice.  Michael Sigmund is a long-time La Crosse resident and patient at Gundersen.  He explains,“It’s the nurse who asks the question when you first walk in the door.  ‘How are you doing?  You have any pains today?  Do you have an advance directive?’”

Michael Sigmund (far left) at La Crosse Coffee Shop

Others come to Gundersen to complete their advance directives because of peer pressure from friends and family.  Karen (who did not want her last name used) sought out the assistance of Gundersen facilitator Janet Olmstead for help with her advance directive.  Karen put off this visit for many years, but finally overcame her hesitancy after speaking with a friend.  “I don’t want somebody else stuck with making decisions,” she says. “It’s a burden for them to make decisions that they don’t know what I want.  So I just thought, ‘now is the time.’”

Karen and Janet Oldstead, a Gundersen advance care planning facilitator

Karen says she doesn’t want heroic measures or life-prolonging treatments if she’s no longer functional. Like Karen, many of Gundersen’s patients want medical treatments stopped if there’s little or no hope of recovery.  Honoring patient preferences has resulted in fewer tests and expensive procedures.  “We are very successful in outcomes in decreasing the costs at the end of life in comparison to lots of other systems,” says Gundersen CEO Dr. Scott Rathgaber, “I can tell you that’s millions of dollars that are left on the table because of our commitment to the patients.”

The Gundersen program was so successful that Hammes took it city-wide.  In the early 1990’s, Gundersen partnered with the other three local hospitals and formed a coalition called “Respecting Choices”.  It brought churches, social service agencies, and nursing homes together and trained their staff to do community education and outreach.  This concerted 25-year campaign has done much to raise public awareness around end-of-life planning and advance directives.  

The La Crosse model comes to the Bay Area

Inspired by La Crosse’s success, Kaiser Permanente worked with Gundersen and started its own Life Care Planning program in 2012. Among its goals is to increase the number of patients completing advance directives.  Over 600 physicians, nurses, and social workers have now been trained as facilitators.  Kaiser palliative care specialist Ruma Kumar says much of what Kaiser did was modeled after the Gundersen program.  “We’re hoping to do the same thing over the next eight to 10 years,” she says. “To get greater than 90 percent of our patients with planning done.”

But replicating the Gundersen model throughout the entire Bay Area presents huge challenges.  Bringing together all the hospitals and the hundreds of churches, senior facilities, and social service agencies would be extremely difficult and expensive.  In addition, the Bay Area has a much larger, diverse population with multiple languages and cultures.  Without language-proficient facilitators, outreach to all sectors of the Bay Area would be nearly impossible.  

Educational outreach efforts largely depend on volunteers organizations like the East Bay Conversation Project, a community-wide coalition working to help people plan their preferences for care at the end of life.  At a recent gathering in Berkeley, Alison Rodman and two other volunteers talked to a group of seniors on how to complete an advance directive.  She tells them that forms are available on-line.  “It’s a pretty simple document that’s legal and you don’t have to go through great expense by using a lawyer or having it notarized,” Rodman explains.

Don’t wait until it’s too late

La Crosse resident Leah Brueggeman is glad her family didn’t wait.  “And of course, we don’t like to think of death and dying but—it happens,” she says.  Several years ago, Leah’s husband Jim made the decision to stop medical treatment for his ailing mother.  But following her death, Jim had second thoughts.  “I came home and my husband—he was just nearly sobbing.  He was just distraught,” Leah recalls, “He said ‘I killed my mother.’  He said ‘We stopped her medication.’  I said ‘That’s what she wanted.'”

Leah Brueggeman

Unbeknownst to Jim, his mother had filled out an advance directive.  Leah went to his mother’s assisted living facility and found a copy of it.  “We got it out.  Her wishes are right here:  no medication blah blah blah,” Leah says. “I took that home and said ‘Honey, take a look at this.  This is what your mother wanted. You’re not killing her.'”

Jim stopped agonizing over his mother’s death, now that he no longer had to guess at what she wanted. Thanks to her advance directive, Jim and Leah were able to avoid the guilt and conflict that had torn apart the family of Terry Schiavo over 20 years ago.  

Complete Article HERE!

Posted on

Legalizing Aid In Dying Doesn’t Mean Patients Have Access To It


Dr. Lonny Shavelson heads Bay Area End of Life Options, a Berkeley, Calif., medical practice that offers advice and services to patients seeking aid in dying under the state law enacted last June.

 

By JoNel Aleccia

[I]n the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs — but only, he says, because too few others would.

Shavelson, director of a Berkeley, Calif., consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers have refused to participate in the state’s End of Life Options Act.

“Those are the ones who could find me,” says Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”

Across California, and in the five other states where medical aid-in-dying is now allowed, access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.

Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.

In Colorado, where the nation’s latest aid-in-dying law took effect in December, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.

Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers within 100 miles willing or able to dispense the lethal drugs, say officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.

“That’s why we still have active access campaigns in Oregon, even after 20 years,” says Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”

In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.

“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”

Lack of access was also an issue for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.

“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”

Schiller’s hospice turned down her request, and she couldn’t find a local referral, forcing Linda Fitzgerald to scramble to fulfill her mother’s last wish.

“I thought it was going to be very simple and they would help us,” says Linda Fitzgerald. “Everything came up empty down here.”


Annette Schiller of Palm Desert, Calif., who was 94 and diagnosed with terminal thyroid and breast cancer, had trouble finding doctors to help her end her life under California’s new aid-in-dying law.

Opponents of aid in dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.

“People consider it a breaking of professional integrity,” says Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.

But those decisions can effectively isolate people in entire regions from a legal procedure approved by voters, advocates said.

In California’s Coachella Valley, where Annette Schiller lived, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid in dying, hospital officials said.

“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.

Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.

“All we have done is say it can’t be done in our facility,” he added.

In practice, however, that decision has had a chilling effect, says Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.

“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”

Patients eligible for aid-in-dying laws include terminally ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify that they meet the qualifications.

Many doctors in California remain reluctant to participate because of misunderstandings about what the law requires, says Dr. Jay W. Lee, past president of the California Academy of Family Physicians.

“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee says, adding that doctors have a moral obligation to address end-of-life concerns.

There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.

“They don’t want to be known as the ‘death docs,’ ” says Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.

Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.

At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.

Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.

Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs. On Aug. 17, she slowly ate a half-cup of applesauce mixed with Seconal, a powerful sedative.

“Within 20 seconds, she fell asleep,” her daughter recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”

Complete Article HERE!

Posted on

The virtual reality ‘death simulator’ that could help ease terminally ill patient’s fear of dying

It could be a helping hand for the terminally ill.

The moment of death: Researchers first used headset to trick participant’s brain into thinking their VR body is real. Then, they were taken out of the body to simulate an out of body experience.

By Mark Prigg

[R]esearchers have revealed a virtual reality simulation that can help people comes to terms with death.

It teaches then how to become ‘disconnected’ from their physical bodies.

Mel Slater at the University of Barcelona, Spain, and his team used an Oculus VR headset on 32 patients.

‘Immersive virtual reality can be used to visually substitute a person’s real body by a life-sized virtual body (VB) that is seen from first person perspective,’ they wrote.

Researchers fool the volunteers into thinking the virtual body was their own.

While wearing a headset, the body would match any real movements the volunteers made.

They were also fitted with movement sensors and vibrating units on their hands and feet.

When a virtual ball was dropped onto the foot of the virtual body, a vibration was triggered on the person’s real foot.

Once they became ‘in sync’ with the virtual body, participants were then transported to a virtual living room in which they could move their legs and kick balls thrown at them from a distance.

Then, they were taken out of the body.

‘The viewpoint of the participant was lifted out of the virtual body towards the ceiling of the virtual room, and just behind the body, so that the body could be seen below,’ the team wrote.

‘When the viewpoint is lifted up and out of the VB so that it is seen below this may result in an out-of-body experience (OBE).’

‘Fear of death in the experimental group was found to be lower than in the control group.

‘This is in line with previous reports that naturally occurring OBEs are often associated with enhanced belief in life after death.  

People who had felt totally disconnected from their body – and the virtual body – reported having a significantly lower fear of dying.

‘The effect was quite strong,’ Slater told New Scientist.

He hopes the experience might give a feeling that a person’s consciousness is separate from their physical body.

‘It gives a sense that it’s possible to survive beyond death,’ he says.

The virtual experience is similar to some kinds of near-death out-of-body experiences.

Some people who survive heart failure have described seeing the hospital room from the ceiling during critical moments, says Slater.

‘Our results open up the possibility that the virtual OBE experience provides an implicit learning that consciousness in the sense of the centre of perception can be separate from the physical body, and that therefore death of the physical body is not necessarily the end of consciousness,’ the researchers concluded.

Complete Article HERE!

Posted on

What does my family need to know about end-of-life care?

By Sunrise Senior Living

[T]he loss of a loved one is always a somber experience, but thankfully, due to the continuing advancements in health services, the number of Americans that are able to spend their final days in a comfortable and controlled setting is growing.

End-of-life care allows individuals to experience that final chapter in life with a dignified and calm feeling, as well as offer family members that peace of mind, support and a sense of comfort that can help ease that sorrow during this time. Being informed and conscious of this subject makes taking those steps in coordinating this care much easier and straightforward for everyone involved.

When is it time?
There are many conditions in existence that over time can become increasingly difficult and expensive to treat. This not only can be a burden for the patient, but can also create a painful and challenging experience as well. While deteriorating conditions and intolerable discomfort are two chief concerns when considering hospice care for a loved one, things such as complicated health care needs, sustained pain, and loss of mobility or capacity are also matters that should be taken into account.

It is hard to decipher the “right time” when deciding to make the decision to begin end-of-life care. Each and every family has a different approach and belief that can affect their decision. Ultimately, this choice is one that is deeply personal and involves tough choices for the whole group.

What does end-of-life care look like?
There are several types of end-of-life care available. Hospice care is for individuals that are nearing the end of their lifetime, with a terminal prognosis of six months or fewer. Palliative care is one that is more fitting for older adults living with a chronic condition and are in need of relief from the on-going pain and symptoms. In some cases, families may also choose to provide end-of-life care from home.

In either case, a full team of medical professionals and support staff work around the clock to make sure that patients are as comfortable and well-cared for as possible. Every facility is different, which means that nurses and doctors may be supported by home health aides, spiritual counselors and social workers depending on the circumstance.

With that being said, there are people dedicated to helping family members navigate this new challenge and providing guidance with whatever might come next.

Paying for end-of-life care
The Kaiser Family Foundation reported that hospice care is covered by Medicare for eligible older adults, usually individuals with a terminal diagnosis. This organization makes affording end-of-life care easier for many families.

Other than that, Medicaid, private insurance and other sources of payment such as a pension or retirement fund may be used to pay for these services. Families should discuss different payment models and work with a knowledgeable provider to uncover all available options.

Selecting the right partner
One thing families should understand when facing the possibility of end-of-life care is being aware of all available resources available that offer support and guidance during this difficult time. The care professionals at Sunrise Senior Living can advise and help coordinate care for an older loved one. With the help of Sunrise, the best, most appropriate end-of-life care can be identified and any transition can be made as smooth and as comfortable as possible.

Complete Article HERE!

Posted on

Put end-of-life wishes at the top of your to-do list

By John Muscedere

[T]he new year is a good time to put making end-of-life wishes at the top of your to-do list.

It’s a perfect time to tell family and friends your health-care preferences in case one day you’re unable to speak for yourself. This advance care planning is good for your peace of mind and for your loved ones, too.

Studies show that people who have conversations about their end-of-life preferences are much more likely to be satisfied with the care received. And their caregivers are less likely to suffer from depression or be left wondering if they made the right decisions for their loved ones.

The majority of those nearing end of life are often unable to make decisions for themselves. Yet a recent poll found that only half of Canadians had discussed their wishes with family or friends – and only 10 per cent had discussed the topic with health-care providers

So here are four steps to help guide conversations about your advance care plan:

1. Reflect on what makes life meaningful for you
What do you value most about your physical and mental health? For many, this includes independence, interacting with family and friends, and favourite hobbies. Now imagine what might make life unacceptable for you.

Modern medicine can and will prolong life in many cases. But it can also mean prolonging the end of life and may require living with severe limitations, such as reduced mental capacity, loss of ability to control bodily functions, lack of mobility and loss of privacy. This is unacceptable to many people; one study found that over half of seriously-ill patients in hospital would rather not be kept alive on life support when there is little hope for a meaningful recovery.

Advance care planning is typically thought about in the context of advanced age or specific diagnoses such as cancer. However, it’s important for everybody to do, and particularly for those with multiple medical problems and frailty. While frailty increases with age, it can occur at any age and increases the chances of dying. Although catastrophic illness can occur at any time, frailty increases the likelihood that end of life is nearing and when life-prolonging procedures may not be appropriate or effective.

While many people reaching the end of life say they want to die at home, without an advance care plan, they are often trapped in hospital enduring heroic procedures  rather than receiving comfort care during the little time they might have left. Comfort care includes pain and symptom management to prevent or relieve suffering at the end of life

2. Find out your care options and choose a substitute decision maker
Learning about care procedures for end of life will help inform your advance care plan. You can find some common medical and legal terms at advancecareplanning.ca. And talk to your doctor.

Many sick or elderly people worry about being a burden to their families. The good news is that patients who have end-of-life conversations place less of a strain on caregivers, and are more likely to receive hospice care or palliative support at home.

Think about and designate a substitute decision maker. This is someone you trust to make health-care decisions based on your wishes in the event you can’t make them.

3. Talk about your wishes
Talk to your substitute decision maker, loved ones and your doctor

Your loved ones will be grateful that you spoke up. When patients have an advance care plan, their families are much more likely to know that their loved one’s wishes were known and followed. Lack of planning has been shown to leave families less satisfied during terminal illness or in the months following death.

There are many ways to get the conversation started and it doesn’t have to be grim. The pallimed.org blog recommends humour as a useful strategy. It may take a few tries to be heard but don’t give up

4. Write it down – just like a will
Once you’ve arrived at a plan, write it down and make sure everyone knows. In particular, make sure that health-care providers and institutions are aware and have noted it in your chart. At present, patient preferences are only known in a minority of cases.

Canadians are living longer and healthier. A little planning can ensure the well-being of you and your loved ones at the end of life as well.

You’ve probably already written a will for your things, so why not write an advance care plan for yourself?

Complete Article HERE!

Posted on

Discussing end-of-life care for children

Kris Catrine

By Jana Shortal

[E]very year 43,000 children die in the United States.

But, when people talk about death they rarely talk about kids. For many, the death of a child can be too much to even consider talking about. But, kids do get sick and face the end of life.

When your work concerns the children facing the longest odds you do not get to ignore the truth.

“I can’t tell you how many times kids have answered that question of ‘What are you worried about?’ with ‘I’m afraid I’m dying and it scares mom to talk about it,’” says Kris Catrine at Children’s Hospitals and Clinics of Minnesota.

“Anything else a kid wants to talk about they can talk about with their family and have support and this is sort of taboo. So, the scariest thing in their mind they can’t talk about; that’s a lot of weight on a child,” adds Catrine.

Dr. Stefan Friedrichsdorf at Children’s Minnesota and his staff work tirelessly to fight for life, but also realize another conversation has to happen.

“What we are asking is like considering what your daughter is up against, what are you hoping for? And, most of time, we hear ‘I hope for miracle cure.’ And, then you look them in the eye and say ‘I hope this too,’” said Dr. Friedrichsdorf. “Just in case a miracle does not happen, what else are you hoping for?”

They talk about what will make the child happy. Whether that’s just to go outside, go to school again or just to talk about what’s going on.

Kris Catrine and Dr. Friedrichsdorf work in the Palliative Care program at Children’s Minnesota.

Complete Article HERE!