What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!

How These Med Schools Are Improving End-of-Life Instruction

It’s a shift toward care based on who the patient is and what he or she wants

By Bruce Johansen

While all medical students must witness a birth, being present for someone who’s dying is not a requirement. Dying has traditionally received little attention in medical school curricula. Interviewed by The Boston Herald earlier this year, Dr. Atul Gawande, surgeon, founder of the Massachusetts Coalition for Serious Illness Care and author of Being Mortal (also a Next Avenue Influencer in Aging) said his end-of-life training amounted to one hour of discussion during his first two years in medical school. He’s now part of an innovative effort to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.

What Matters Most at End-of-Life

“We’ve been wrong about what our job is in medicine,” Gawande writes in Being Mortal. “We think our job is to ensure health and survival, but really it is larger than that. It is to enable well-being.” Gawande emphasizes training students to discern what gives a person’s life meaning and then choosing a course of treatment based on what that information involves. It’s a shift away from a “fix-it” mentality, which focuses on prolonging life.

Gawande credits the transformation in his thinking to observing palliative care clinicians and geriatricians. On an episode of PBS’ FRONTLINE, Gawande explained that seeing his colleagues’ conversations with their patients taught him what he could do better for his own.

One of those colleagues, Dr. Jennifer Reidy, is chief of palliative care at UMass Memorial Medical Center in Worcester, Mass. and a University of Massachusetts Medical School professor. “What’s great about palliative care is that you can incorporate it into your practice no matter what specialty you are,” Reidy says.

Holding conversations about what matters most and “being able to treat people’s pain and other distressing symptoms that affect their quality of life are all things that any doctor should be able to do in their field,” she says. Reidy foresees eventual changes in training extended to entire care teams: nurses, nurse practitioners, social workers, chaplains and pharmacists.

Reidy was one of the first students to do a palliative care rotation during her training at University of Vermont’s Larner College of Medicine in the late 1990s. There she learned that the care plan should be driven by who the person is, not by the available technology or what was possible.

If a person is diagnosed with an incurable disease, she says, the essential question comes down to: How do you make the most meaningful use of whatever time remains?

According to Reidy, this often means “focusing on being with the people who they love, and being more in their ‘real lives,’” rather than in the hospital. Given the option to forego harsh, life-prolonging therapy, many take care of things left undone such as making amends or getting financial affairs in order.

“It’s so unique to whatever is meaningful for that person,” Reidy says.

Fired Up Students

While details of the curricula will look different, Reidy says students at each participating school will be taught complex communication procedures for breaking difficult news and having conversations about prognoses and end-of-life planning.

When it comes to communication, “no one gets a pass anymore,” says Reidy. What’s exciting to her is that students are fired up about these developments. “It really taps into their sense of meaning and purpose, and why they came into medicine in the first place,” she says.

Students are learning how to share information in chunks and in clear language, then to pause, listen, allow questions, allow silence, allow emotion and sit with someone’s sadness or anger.

“Then they’ll be able to figure out amidst all of this, what’s most important, what should we be focusing on,” Reidy says.

To ascertain what will bring well-being, Gawande promotes students learning to ask:

• What is your understanding of your illness?
• What are your fears and worries for the future?
• What are your priorities if time becomes short?
• What are you willing to sacrifice and what are you not willing to sacrifice?
• What does a good day look like?

Instead of prompting a conversation about death or dying, these questions get to the crux of: How do you live a good life all the way to the very end, with whatever comes?

Building Momentum

Tiffany Chen, a fourth-year University of Massachusetts Medical School student, is a “champion” of the project, says Reidy. Growing up in a multigenerational home with parents and grandparents, Chen was first exposed to palliative care during her senior year of college when her grandfather was diagnosed with Lewy body dementia at the end of his life. Two years later, when her grandmother was diagnosed with bladder cancer, Reidy was assigned to be her palliative care doctor. Chen credits Reidy’s care with changing her grandmother’s course of treatment and the “quality of her death.”

Combined with a love of helping people, that experience inspired Chen to pursue a medical career. She hopes to go into family medicine and eventually have a fellowship that’s integrated in geriatrics and palliative care.

Chen has taken leadership at her school, including being part of organizing a focus group of students interested in giving palliative care “more of a voice.” The new curriculum, she says, promises to make students “better equipped at baseline to have these conversations.” They’ll become more adept at reading people’s cues and better communicators overall, “by first listening,” she says.

“The biggest thing is actually practicing with someone who’s experienced observing, and then giving you feedback,” Chen says. At her school, a simulation lab and new training methods, including role-playing patient actors, are key.

Reidy feels hopeful that the consortium is part of a larger movement, noting that medical schools at the University of Rochester and Yale University have stepped up as leaders.

Massachusetts offers a new model — the first time each of a state’s medical schools have joined forces. It’s this collaborative element that is having an impact on her school’s administration, says Chen. “Prior to this, you’d talk about palliative care being very important and needing to be in the curriculum, but that’s true of a lot of things.” The partnership has created momentum.

Complete Article HERE!

5 Life Lessons From End-of-Life Experts

Make sure to do these things while you are still able

By Lisa Fields

You’ve heard it countless times: Life is short, so appreciate each moment.

People with life-limiting diagnoses know this intimately: When they come to terms with their mortality, their priorities often change, and they may try to squeeze as much substance into their lives as they can. This often involves trying to resolve long-standing problems with loved ones and strengthening important relationships.

Very few healthy people live this way, though. We get caught up in the details of our busy lives and often forget to put things in perspective, believing that we’ll have time to sort everything out. But end-of-life experts believe that everyone should adopt some of the attitudes and values that dying patients embrace.

“It’s easy to put something off into the future,” says John Mastrojohn III, chief operating officer of the National Hospice and Palliative Care Organization. “For some, that future may not be as long as we’d like. Having meaningful conversations, or doing other things that bring joy, can have a profound impact on how we feel about ourselves and others.”

You may be inclined to delay these types of conversations if you don’t sense an imminent need. But they can positively impact your relationships and help you realize what’s most important.

“Those of us who work with people who are seriously ill have found that [saying] ‘Please forgive me,’ ‘I forgive you,’ ‘Thank you’ and ‘I love you’ — that almost always has value to people, whether relationships are fractured or strong,” says Dr. Ira Byock, a palliative care physician in Torrance, Calif., and author of The Four Things That Matter Most.

End-of-life experts believe that the following advice — which they often share with patients who are in the final weeks or months of their lives — is surprisingly well-suited for active, healthy people, too:

1. Adjust Your Priorities

You may take your friends and relatives for granted because you’re focused on a work project, your upcoming kitchen renovation or the number of “likes” that you received on a Facebook post. But it’s important to periodically stop to appreciate the meaningful relationships in your life.

“The things that matter most to people aren’t things; they’re other people,” Byock says. “Ask somebody who’s facing cancer or chemotherapy for the third or fourth time what matters, and the answer they give will always include the names of people they love.”

2. Make Time for Loved Ones

Your schedule may make it difficult to see friends or relatives as often as you’d like, but you can change that. Giving priority to your most important relationships should make you feel less frazzled and more grounded.

“There is not a single seriously ill patient I know that worries about all the current items populating their calendar when they receive a life-threatening diagnosis — their thoughts go immediately to their time with those they love,” says Dr. Cory Ingram, a palliative-care physician at the Mayo Clinic in Rochester, Minn. “There are some things in life to postpone; however, relationships with those who matter aren’t on that list.”

3. Have Meaningful Conversations

Most people don’t apologize, seek forgiveness, offer gratitude or extend feelings of love to their closest friends and family members on a regular basis. They may believe that their feelings are tacitly understood by their loved ones. Or they may feel that the topics are too significant to broach in everyday conversation, so they keep their feelings inside.

But putting words to your feelings can boost your relationships significantly. It’s particularly important for parents who may not have shared their thoughts with their children — especially adult children.

“It’s worth taking the time to sit with each of your children and let them know how proud you are to be their mom or dad,” Byock says. “[Or tell them] ‘I love you more than I can say.’ Who else on this planet can give that gift in your voice? I’ve counseled many children who were crying after the death of a parent, who never heard words of that nature. Some of those children were in their 60s.”

4. Don’t Hesitate to Share Deep Feelings

In many families, people don’t discuss emotions unless there’s a crisis, but you can work to change that. Consider how you’d feel if you or a loved one died suddenly, before you had the chance to share what was in your heart. Revealing your feelings can help to alleviate that sentiment and bring you closer.

“Some people say, ‘My kids know that I love them,’” Byock says. “’I say, ‘Great! Then it will be easy for you to say it.’ No excuses and no mumbling.”

It can be particularly difficult for some men to talk about their feelings, especially if they’ve maintained a gruff, stoic reputation. But once they open up, their words can deeply move the people in their lives.

“Most of them aren’t so tough — they just learned to cloak their feelings in a hard shell,” Byock says. “We guys aren’t as verbal about our emotions. We have emotions. We just don’t talk about them. Talking about this stuff can be very impactful.”

5. Prepare for the Worst

Many terminally ill people create advance directives, which are documents that name a loved one to make medical decisions on their behalf in case they are ever unable to speak for themselves.

But two-thirds of healthy people don’t have advance directives, perhaps because it requires them to consider their own mortality. Advance directives are invaluable for everyone, however, since we never know what may happen.

“It’s a way of taking care of your family,” Byock says. “I have an advance directive. Not because I have a serious illness, but because I have a family. I’m a dad, and if I’m in a car accident or have a stroke, if my wife and daughters would struggle, I can give one of them clear authority to speak for me, with no ambiguity. I can give them some sense of what I think I want, to lift a little bit off their shoulders.”

After you designate someone to speak on your behalf, let them know.

“Completing the document is only part of the requirement,” Ingram says. “The real work of completing an advance directive is having a conversation about your values, preferences and priorities for health care with those you named.”

Complete Article HERE!

Implantable defibrillators may cause dilemmas for older patients

By Carolyn Crist

Defibrillators implanted in the body to kickstart the heart can be lifesaving for some people, but as patients age they may face difficult conversations about when to replace or deactivate the devices.

Conversations about end-of-life care, in particular, can drive a wedge between patients and doctors and create difficult decisions for families, an international team of cardiologists writes in the American Journal of Medicine.

“The standard consent process does not fully inform patients receiving (the device) about all the downstream implications,” said co-author Dr. Arnold Eiser, an adjunct fellow at the Center for Public Health Initiatives at the University of Pennsylvania in Philadelphia and a professor of medicine at Drexel University.

Implantable cardioverter defibrillators (ICDs) differ from pacemakers, which control abnormal heart rhythms. Pacemakers prompt the heart to beat at a normal rate through electrical pulses, whereas ICDs monitor heart rhythms and shock the heart to prevent sudden cardiac arrest.

Older patients may face a difficult choice of when to stop using an ICD, especially if shocks become painful or it continues life longer than desired, said Eiser.

“Downstream decisions include whether the device no longer serves the patient’s best interests,” he told Reuters Health by email. “We believe a well-informed patient is an important aspect of ethical medical practice.”

The informed consent process could prompt this conversation, the study authors note. When patients agree to surgery for a device, they should be aware of the benefits and risks, and the information should be presented in a way that families can easily understand. Current consent forms tend to concentrate on short-term risks and benefits rather than broader device-related issues that may emerge later in life, the authors write.

By talking about advance care planning and next-of-kin choices regarding heart care and treatment options, doctors can document what a patient’s wishes are before facing a clinical crisis at the end of life. Regular conversations during check-ups would help as well.

“It will be better to prepare all parties for the decisions that come into play as the patient’s medical condition changes,” Eiser said. “It is an unusually complex decision, but it’s not always presented in that way.”

The decision-making process should be clarified as well, the authors urge. Older patients often listen to advice from authority figures such as their doctors. This may lead to a bias toward implantation.

Instead, ICD decisions should include the patient’s multifaceted health conditions and the future effects on wellbeing, prognosis and end-of-life, the authors write. The patient’s primary care physician and cardiologist should be included in conversations with the patient and family.

“We have to have an ongoing discussion with these patients about the possibility of deactivation,” said Dr. Annika Kinch-Westerdahl of Danderyds Hospital in Stockholm, Sweden, who wasn’t involved in the essay.

Kinch-Westerdahl and colleagues have studied the high risk of painful shocks ICD patients may feel near the end-of-life. They’ve also researched what cardiology, internal medicine and geriatric specialists understand about ICDs. Although cardiologists were well-versed in the risks and benefits, most internal medicine and geriatric doctors needed more training.

“We need to support our patients in their choices throughout their lifespans, not only at a point when they have to accept a new treatment – but also when it is time to terminate an existing treatment,” she told Reuters Health by email.

To maintain communication with ICD patients and their families, primary and cardiac care teams should appoint a doctor to stay in touch and regularly check on the patient’s decisions. Systems should be in place in primary care and specialist offices to make sure staff know how to manage ICD devices, talk about them, and reprogram or deactivate them when needed, the authors write.

“It’s important that patients are aware that turning it off is an option, especially as their goals of care shift to the end-of-life,” said Dr. Rachel Lampert of the Yale School of Medicine in New Haven, Connecticut, who wasn’t involved in the paper.

“The important question is how to improve communication between patients and their physicians,” she told Reuters Health by phone. “We all need to feel comfortable talking about it.”

Complete Article HERE!

Why Cannabis For Palliative Treatment Is A Better Choice Than Opioids

By Prakash Janakiraman

Most treatments are meant to heal, but some are for palliative care (end of life care) in terminally ill patients. Palliative care is to provide symptomatic relief from a chronic and serious illness, and to reduce the risk of developing co-morbidities and also to improve the patient’s quality of life. The aim of the palliative care is not to treat or cure the underlying disease, but to treat the bothersome symptoms of the disease. Some of the illnesses that may utilize palliative care treatments include cancer, HIV/AIDS, ALS, multiple sclerosis, etc.

Finding a proper and safer course of treatment (long-term drug safety) is one of the main challenges being faced by palliative care practitioners. The goal of the drug regimen is to alleviate the symptoms as well as to mitigate the adverse events of these drugs. For palliative care of cancer patients, opioid analgesic is the prime choice of physicians, but it can cause serious harm – or even fatal events – in the long run.

The therapeutic potential of cannabinoids to treat sleep problems, pain and anorexia might play an important role in palliative care. Cannabinoids promote analgesia and inhibit inflammation via endogenous signaling, along with other benefits such as neuroprotection and anti-cancer activity, which are significant for terminally ill patients. In cancer patients, exogenous cannabinoids act synergistically with endogenous opioids and provide pain relief, opioid-sparing benefits and reduce opioid dependence and tolerance threshold. Cannabinoids may have palliative benefits not only for cancer patients, but also in neurodegenerative, HIV/AIDS and chronic pain patients. Despite these benefits, the use of cannabinoids in critical and palliative care patients remains controversial.

According to DEA classification, cannabis is a Schedule I drug that is hazardous and without any medicinal value. Most cannabis strains do not exceed 20% THC, whereas prescription drugs, such as Dronabinol, has a 100% THC-like substance, which has been classified as Schedule III drug. Naturally occurring cannabis has several ingredients that augment the treatment benefits and negate the adverse events. However, this is not applicable in synthetic, single compound cannabinoid formulation. To reduce opioid-related morbidity/mortality and improve palliative care in terminally ill patients, considering the cannabinoids as a mainstay pain management drug is the critical need at the moment.  

The risk-benefit profile of cannabinoid-based medicine greatly depends on the drug formulation and route of drug delivery.

Problems Associated with Palliative Care

Opioid overdose-related deaths are rising across the world and in the United States. Increased availability of synthetic opioids worsens the overdose mortalities, and most of the cases are due to misuse or accidental exposure. The widespread expression of mu-opioid receptors in the brainstem leads to increased binding of opioids, which also controls the respiration and is the cause of opioid overdose mortality. Overdose opioids bind with these mu-opioid receptors, which results in the suppression of breathing and death. Long-term opioid treatment also leads to development of tolerance, and the patient often requires incremental dose increases for better pain management. Although, mu-opioid antagonists, such as naloxone, are available to reverse overdose, it must be administered within few minutes of overdose crisis, which is not always possible. In addition to opioid tolerance, opioid dependence or addiction can develop during palliative care. Opioid addiction is a serious, relapsing and chronic neuro-psychiatric illness that requires long-term treatment for recovery.

The complete symptom burden of palliative care patients is poorly understood and opioid treatments may add up to other problems, such as severe constipation and prescription of laxatives to relieve constipation. According to a large assessment study that involved 50,600 Caucasian cancer patients who were on opioid therapy as palliative care, approximately 12% of patients reported moderate or severe constipation at the first assessment, and nearly 19% patients reported the same during the last assessment. All patients were on opioid therapy that resulted in moderate to severe constipation. Prescription of laxatives to treat the constipation is likely in these patients. The goal of the palliative care treatment is to relieve the symptoms, if not to mask the agonizing pain in palliative care patients including terminally ill cancer patients. Opioid therapy appears to be worsening the problems by causing/increasing distressing symptoms that require further treatments, which is undesirable and reflects the complexity and quality of palliative care treatment.

Why Cannabinoids Are Better Than Opioids In Palliative Care

While healthcare practitioners are in dilemma about prescribing medical cannabis for illnesses, the use of medical marijuana for palliative care is trending upward. Medical cannabis significantly reduces the use and dependence of opioids and also opioid overdose-related death. According to a study by RAND Corporation, there is a plausible link between the legal medical marijuana dispensaries and a reduction in opioid-related deaths in those areas. The study compared the rate of opioid-related deaths in states with and without legal marijuana dispensaries. As reported by the study, a lower rate of opioid-related mortalities (16-31%) and fewer reports of hospitalizations (28-35%) for related treatments were observed in states with medical cannabis dispensaries, compared to states without medical cannabis dispensaries. Patients who obtained treatment without legal intervention (penalized due to illegal substance use), further decreased the rate of hospitalization (up to 53%). The duration of the presence of legal marijuana dispensaries were also found to be related with the decline in opioid-related morbidities and mortalities.

Palliative care patients can easily obtain prescription medical cannabis from these legal dispensaries to reduce their reliance on opioids, prevent the opioid-related problems and also for better management of their symptoms. According to Nora Volkow, Director of the National Institute of Drug Abuse, the evidence about the efficacy of cannabinoids is strong and cannabis could ‘provide a powerful new tool’ to combat opioids and their related problems.

According to a comprehensive literature review of available studies, patients reported improvement in quality of life, and the improvements were considered as a therapeutic outcome by the patients. However, the healthcare providers raised concerns, and were in a dilemma about supporting the therapeutic cannabis use, as the used cannabis was illegally obtained.

A Norwegian study concluded that cannabinoids possess therapeutic effects in neuropathic pain, as well as moderate anti-emetic and appetizing effects in certain groups of patients. Due to non-availability of randomized clinical trials, the study authors were unable to recommend the medical use of cannabis. All of these symptoms and indications are applicable for palliative care cancer patients. To treat vomiting, anorexia and pain, a regimen of at least three drugs should be administered, and the patient must go through the side effects of these medicines. Instead of three drugs, cannabinoids as a monotherapy can be considered to treat all three symptoms, which are common in terminally ill cancer patients. Hence there are grounds to employ medical cannabis as a palliative care drug.

Analgesia is a common benefit shared by opioids and cannabinoids. However, cannabinoids differ from opioids in anti-nociception by the involvement of endocannabinoid system. Further studies suggested the additive effects of cannabinoids and opioids in pain modulation. Medications being prescribed to augment the opioid effects and to reduce the opioid doses are called opioid-sparing drugs. Cannabinoids can greatly increase the analgesic potency of opioids and thus relieve pain in lower doses of opioids. According to studies, cannabis greatly reduced the need for opioids, or even complete eliminated the need for opioid use. Additionally, the cannabinoids work synergistically in alleviating some of the symptoms of terminally ill patients, such as pain in end-stage cancer patients.

Clinical trial evidence found that oral cannabinoids (Sativex) provided better pain relief in opioid-refractory cancer pain than long-acting opioids. The treatment was well-tolerated by the palliative care patients. According to three randomized control studies, cannabis use significantly improved the appetite, weight gain and stabilized body weight in AIDS wasting syndrome. These benefits might be helpful for terminally ill patients suffering from cancer-associated cachexia.

Conclusion

Most of the systematic review studies that are inconclusive or even against the use of medical cannabis have assessed the randomized clinical trials of synthetic cannabinoids such as Dronabinol but not plant-derived cannabinoids. Even some of the studies that assessed the natural cannabinoids lacked adequate statistical power due to flawed clinical trial design. Assessing these studies cannot provide a definitive conclusion.

Conventionally, palliative care management for most of diseases – including cancer – is opioids. Due to inevitable risk of tolerance, the patient has to take more and more narcotics, even if the drug provides little relief. Higher doses can make the patients become more confused and lethargic, with the risk of developing depression, anorexia, nausea and vomiting.

Cannabis could definitely reduce the dosage of these narcotics and also improve the symptoms by its synergistic actions. For terminally ill patients, marijuana could reduce the anguish, improve the quality of life and may also add days to their life.

Complete Article HERE!

Do We Have A Right To A ‘Good Death’?

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[S]hould doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.

Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?

The right to life is closely linked to the right to health. Under the International Covenant on Economic, Social and Cultural Rights, which the UK has signed and ratified, states are required to “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.

Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.

Is There a Right to a Good Death?

In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.

A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

Sarah Simons

This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.

A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.

What Exactly is CPR?

Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.

CPR specifically refers to the chest compressions, electric shocks and artificial breathing technique used to stimulate and replicate the beating of the heart to pump blood around the body and the breaths taken to inflate the lungs with oxygen. This is effective when a sudden cardiac arrest occurs and someone’s organs stop unexpectedly, but the underlying mechanism of a cardiac arrest is very different from when the heart stops beating as part of the body’s natural decline at the end of life

CPR is traumatic, undignified and usually unsuccessful in patients of all ages.

Sarah Simons

Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.

 

CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.

What Do Experts Have to Say About This?

Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care. The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.

Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”

The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.

Making the Right Choice For The Patient

Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible. 

Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.

Sarah Simons

Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.

As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.

Complete Article HERE!

‘My dad gave us a gift’

Daughter opens up on father’s medically assisted death

Jen Wiles, far left, and Shanaaz Gokool, CEO of Dying with Dignity Canada, second from the right, pose with other speakers ahead of an end-of-life speech on Saturday, June 2, 2018.

By Zach Laing

[A]s with thousands of other Canadians, Robert Wayne Nelson had the chance to die on his own terms.

Nelson’s earlier diagnosis of Parkinson’s disease was enough to handle in the years leading up to his spring 2016 diagnosis of progressive supranuclear palsy — a disease his daughter, Jen Wiles, described as Parkinson’s “evil big brother.”

Doctors didn’t know what to do. The severe brain disorder holds no effective treatments.

However, as a biologist throughout his life, the then-71-year-old had always followed legislation surrounding medical assistance in dying.

“My dad was the first medically assisted death in our community,” said Nelson’s only daughter, Wiles, of her father who died on Feb. 15, 2017, in Camrose.

“He really understood that there was a place for this — not that he ever thought he would use it.”

In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code prohibiting doctor-assisted death would need to change to satisfy the Canadian Charter of Rights and Freedoms.

The ruling opened the door for medical assistance in dying and on June 17, 2016, federal legislation allowed people to die on their own terms, under certain circumstances.

In October 2017, Health Canada released numbers showing there were 2,149 medically assisted deaths in Canada between Dec. 10, 2015, and June 30, 2017.

As of April 30, 2018, Alberta Health Services reported 364 Albertans had received medical assistance in dying — of those, cancer, multiple sclerosis, ALS and advanced lung disease are the most-cited health conditions.

Those who wish to end their life on their own terms must have a grievous and incurable condition. Then, they have to make their initial request before two required assessments, followed by a 10-day waiting period — one that can be waived.

Wiles said their fight for her father to undergo doctor-assisted death was a challenging one.

“We didn’t have community support because of our faith-based community, which was really challenging,” said Wiles.

Robert Wayne Nelson pictured in an undated photo, died with medical assistance on Feb. 15, 2017.

“It was really hard to find assessors in central Alberta.”

It took nearly a year for Nelson to get his wish of assisted death, but it was something that left his family at peace.

“Despite the fact that we went through this really challenging couple of months … for us, it was really good,” said Wiles.

“The outcome for our family was positive — it was what he wanted. After his death we felt good, which is a strange thing to say. We did everything with him. We went to the funeral home, we picked up a column burial together, we did all this stuff with him.

“Through all those months, we came to a place that was really kind of beautiful and we have felt good since. We were able to really grieve ahead of time. He was relieved, we were relieved. We got up the next morning and we felt good.”

Knowing he was able to go out on his own terms only help the family he left behind.

“He did not want to go into palliative care, he did not want to see the end of his disease process,” she said.

The day after Nelson died, Wiles’ mother went to her coffee group sharing the story of the day before.

There, a woman who lost her husband nine years prior to a terrible battle with cancer wept openly as she wasn’t able to be over the trauma of his death.

“My dad gave us a gift — we didn’t have to watch that suffering,” said Wiles.

“He already couldn’t write, couldn’t read, he couldn’t be on the computer, couldn’t talk on the phone. All the beautiful things he did with his life, he couldn’t do anymore.”

Shanaaz Gokool, CEO of not-for-profit Dying with Dignity, explained ahead of a Saturday speaking event marking two years since the practice became legal how the process can be different for everybody.

“The more precarious your health is, the greater chance you have of losing capacity and therefore you can lose the right altogether. Medical assistance in dying is a life-affirming treatment,” she said, noting in communities that are less prepared, it’s more difficult to find support.

“Assisted dying for those left behind can be the gift of no regret.”

For those in small communities like the one Nelson lived in, the process for medically assisted death can be a frustrating one.

However, those living in major centres like Toronto can go through the process start to finish in one day.

Gokool said the next step for the country is looking at opening up the legislation to make medically assisted deaths easier and more accessible.

“The problem is that the legislation uses deliberately vague language and it excludes many hundreds and possibly thousands more. We have different interpretations from one end of the country to the other in terms of the eligibility criteria,” she said.

“Then we have different access issues people are having — hurdles and obstacles in their way.”

Complete Article HERE!