Tag: End of Life Care

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Doing Death Differently

Death doulas: the end-of-life guides who are recreating the dying experience

By Isabel Bird

When Rebecca Lyons’ great aunt died, her body remained with the family.

Her aunt’s body was kept cool with the use of dry ice for four days, and the family washed and dressed her for service, held ritual, and prepared themselves for saying goodbye.

“We had candles, we burnt frankincense … it was a gentle process because there was no loss of ownership. It was about coming together and having that time, to laugh and cry, and it wasn’t all doom and gloom,” Ms Lyons said.

“You have looked after this person in life and now you are going to look after this person in death … the whole experience is precious.”

It was a personal death-care experience for Ms Lyons that was also connected to her new role as a death doula.

Doula in Ancient Greek translates to “woman of service” and is traditionally used in the birthing sector, but has been adopted by the death-care movement.

A death doula, end of life doula, deathwalker or death midwife can be hired by a dying person or their family to offer support in a multitude of ways, which can include organising alternatives to conventional funeral home offerings.

Their services ultimately depend on individual need and choice but can range from pre- and post-death planning, assistance with wills or advance care directives, bedside vigils, and the organisation of counselling, respite or other therapies.

Planning options may include dying at home, keeping the body at home for one day or more before burial or cremation, or holding family-led funerals in alternative spaces such as in the home, in the backyard, on a beach or in a forest.

Ms Lyons, a former funeral director, became a qualified death doula four months ago, offering the service as part of her death-care advocacy business You n Taboo.

She said a death doula helped people to make informed decisions, and then worked with families to help carry out those decisions.

“There is so much involved in the death and dying process, yet there is a lack of community knowledge about it,” Ms Lyons said.

“From the point of death a nurse might say ‘which funeral director should we call?’ The question should actually be ‘do you want a funeral director called?’ Right from the start, there is a lack of information given (in the institutional space),” she said.

“When someone dies the family can legally take the body home. Funeral directors are not mandatory, there doesn’t need to be embalming or temporary preservation, coffins are not necessary, and there are choices about the funeral and where it is held, or if they even have one.”

Ms Lyons said planning for death can be beneficial for families because it takes the guess work out of wondering what their loved ones want, and can be beneficial for the dying as they can focus on spending time with family.

Zenith Vorago is the founder of the Natural Death Care Centre in Byron Bay, which has offered deathwalker training for 12 years.

She started working with dying people 25 years ago after dissatisfaction with the conventional way of doing death, which generally involves hiring a funeral home director and relinquishing control of the body.

“We didn’t want to give our people to the medical system, or to funeral directors we didn’t know,” she said.

Ms Vorago explained that the funeral industry in Australia is led by one corporation that had a monopoly over various links in the chain, from funeral homes and crematoriums down to coffin makers.

“There is a lot of money to be made and in my experience people don’t mind paying for a service but they don’t want to get ripped off.”

Ms Vorago also said the health care system would soon not be able to cope with the ageing population, and more people in society would need to care for their own dying.

“What we are doing is skilling people up, so they can participate in that role with some awareness about how to do that well and how to do it with the system (such as) using community nurses,” she said.

“We are empowering people to know what their options are, to consider what is best for them and their people, to make decisions that are right for them, so people die well.”

Social worker Lynne Jarvis has completed Ms Vorago’s deathwalker training, and runs JUMAVE on the North-West Coast.

Her business adopts a holistic, social justice approach to death, offering a range of pre- and post-death services similar to that of a death doula, including funeral celebrancy and the use of cooling blankets for at-home funerals.

Ms Jarvis is also responsible for organising the Coffin Club at Ulverstone, where people can make their own coffins and have open, end-of-life conversations.

She said increased family involvement in the death care process can lead to highly meaningful experiences, and provided the example where an individual held a wake before their expected death.

“It ended up being really beautiful experience for them, it was well planned and simple. As sad and painful as it was, there was still beauty and joy in that process on reflection.”

Ms Jarvis stressed that early planning was important.

“I am focused on training the after-death care (family and friend) network to make sure they know what they need to do,” she said.

“It does take more energy and time … but there is great value and healing, and that healing is really important for the longer term bereavement of those left behind.”

Alternative options, such as taking the body home, will never alleviate grief but it can ease the process.

Ms Lyons said that when someone dies people often feel a loss of control, which is heightened when the body is taken away.

“It brings a massive, massive trauma that adds to the grief … what we are saying to people is that you don’t actually have to do that,” Ms Lyons said.

“For those who suit the conventional processes there are funeral directors out there who do an absolutely almighty job, but, it is a choice.”

She added that alternative options are actually a return to the old way of doing things.

“My grandmother would tell me stories where Mrs so-and-so from three doors down died, and everyone turned up with casseroles, and the body was in the lounge room. People gathered, they mourned and grieved together. The community used to own it. We are reclaiming this lost knowledge,” she said.

“Death has an amazing way of pulling people together, and the process that my family went through, looking after my great aunt – that was truly beautiful.”

Complete Article ↪HERE↩!

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Patient-Physician Discordance Shows Need for Better Communication on End-of-Life Care

At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.

BY Jessica Skarzynski

At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.

In a study presented at the American Society for Clinical Oncology (ASCO) Annual Meeting, Sara Douglas, Ph.D., RN, and her colleagues evaluated the discordance between the goals of both patients and physicians, and how it can negatively impact quality end-of-life care.

The idea for this study was born from the researchers’ initial work examining physician and patient goals of care at end of life in the intensive care unit (ICU). “We found that there was a fair amount of disconnect between what the physicians’ goals were and the families’ goals were,” Douglas, who was lead author on the study, said in an interview with CURE.

However, she added that their initial research was missing the patient voice. “Because the patients couldn’t speak for themselves, we had their surrogate decision makers – which was usually a family member – determine what they thought the patient wanted,” Douglas added. “We didn’t know, really, what the patient was thinking.”

So, Douglas and colleagues took this basic framework and applied it to a situation where they had the greatest opportunity to understand both the patient and physician point of view consistently over time.

In a longitudinal design study that ran from January 2015 to July 2017, 378 patients with stage 4 gastrointestinal (66 percent) or lung (34 percent) cancers and their oncologists were surveyed at enrollment and again every three months for the next 15 months, or until the patient died.

Using a visual analog scale where one end indicated survival and length of life as most important (100 points) and the opposite end indicated that quality of life and comfort were most important (0 points), participants were asked to move a toggle along the continuum to represent their goals at each specific point in time. Discordance between patient and physician scores was defined as an absolute difference of more than 40.

Neither group could see the other’s responses, but Douglas noted the disparities were striking. “We had some scores where the difference was 92 points – one response was 100 and the other was 8. We had a lot of variability in terms of physician and patient responses,” she added.

In total, 168 patients (44 percent) died after an average of 6.5 months after enrollment; however, their results were still presented. At the last assessment prior to death, 32 percent of the patients and their physicians reported having discordant goals. Of these cases, 60 percent of patients had more survival-focused goals compared with 40 percent of doctors. Lastly, 77 percent of pairs with discord at enrollment still had discord at the last assessment before death.

When the physicians were asked what they believed patients’ goals of care were, there was only a 27 percent discord in what the patients’ actual goals were. “Physicians, when asked what their understanding is of what the patient wants, assume it’s the same thing the physicians want themselves,” Douglas said. “This is called false consensus bias, (meaning) I assume you agree with me unless there’s evidence to the contrary.”

Douglas did note that extreme discordance was not the norm. “If you think about it, 27 percent of the dyads were in sharp disagreement, but that means that 73 percent were in agreement to some degree,” she added.
Douglas acknowledged that these findings highlight the need for patients and their physicians to have clear discussions and come to a better understanding, so that patients will receive end-of-life care that is consistent with what they want. But if communication is key, where should it start?

Research has shown that patients often expect physicians to bring up these topics. But due to many factors, including the physician’s comfort levels when dealing with these topics, these discussions may not take place. So, Douglas and her team have begun a new study where they share the information and record the discussion to better understand why each party feels the way they do, and then see if either patient or physician changes their goals.

Ideally, they hope to create a model that empowers patients to take a more involved role in starting these discussions. “If patients can at least have access to […] what their physicians are thinking and why, they can at least make an informed decision,” Douglas said.

“That decision may be that they choose to disregard that information, but at least they’re making an informed decision.”

Complete Article ↪HERE↩!

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What Is a ‘Good Death’?

By R. Scott Rappold

When Beth Wood’s cancer returned in 2014 after 20 years of remission, she made an instant choice: no chemotherapy, radiation, or other life-altering treatments that could only stave off the inevitable.She told her husband so much in the same breath as informing him the cancer was back, after what was supposed to be a routine visit to the doctor.

“She made a decision to say, ‘I’m not going back through that again. I want quality of life, not quantity,’ ” says her husband, David Wood, of Tennessee. “And we were given almost 3 more years.”

They traveled the country, spent a final Christmas with the children and grandchildren, and when she died at the age of 65 on Dec. 29, 2016, it was peaceful, at home, with Beth secure in her faith she was going to a better place. It was, says her widower, a “good death.”

“I thought a lot about those two words. I think to understand death, you have to understand the life of the person. For her, she was not scared of death,” he says.

It’s a concept more Americans, from the elderly to the terminally ill to the doctors who care for them, are embracing. Eight states have passed laws allowing doctor-assisted suicide, although a judge recently overturned California’s 3-year-old law. Conversations about death, once taboo, are now held around the world at so-called Death Cafes. Before former first lady Barbara Bush died in April, she received support on social media when she decided to forgo further medical treatments.

After all, at no point in history have people lived as well as Americans today. So, more people are asking: Why shouldn’t we focus on the quality of our death as well?

Aid-in-Dying Laws

By the end, Kathy Myers couldn’t even get out of bed on her own. A lifelong smoker in Aurora, CO, she had chronic obstructive pulmonary disease.

There were no more bike rides with her husband, no more trips to the mountains, no more working in her garden, no more doing anything without an oxygen tank. So when Colorado voters approved doctor-assisted suicide in 2016, she was determined to use it. But because of misunderstandings or a reluctance to act under the new law, they had a hard time finding a doctor willing to act on it.

“What I came up against was a lot of ignorance. Our family doctor said it was going to take court orders and years before we could opt for that,” says her husband, Herb Myers.

After the couple pleaded for help through local media, a doctor got in touch and made a house call, agreeing that Kathy met the criteria under the new law: a prognosis of less than 6 months to live and sound mental capacity. A second doctor confirmed, as required by the law, and on March 12, 2017, Herb emptied 100 capsules of Seconal into a glass of Gatorade.

They held hands as she drifted into unconsciousness. A short time later, a hospice nurse confirmed she had no vital signs. It was, Herb said, “very gentle and very quick.” She would’ve been 63 the next day.

In the first year of Colorado’s law, 69 people were prescribed aid-in-dying drugs by 37 different doctors, and 78% of them were able to die at home, according to the Colorado Department of Public Health and Environment.

Nationwide, the movement has come a long way since Jack Kevorkian was sent to prison in 1999 for assisting in patient suicides. Oregon in 1994 became the first state to pass an aid-in-dying law, which has been used more than 1,000 times. In that state, Catholic groups and other conservatives remain opposed, although they are not actively fighting the law.

Sam DeWitt is the Colorado access campaign member for Compassion and Choices, a Denver-based nonprofit that advocates for such legislation around the country. The organization and its staff and volunteers have worked to educate doctors about the new law. They find the most opposition in rural areas and at medical facilities with religious affiliations or out-of-state ownership. Medical facilities can opt out of the law, prohibiting their pharmacies from filling such prescriptions or such deaths occurring on the premises, but they can’t forbid doctors from taking part.

“It really is a two-pronged approach to getting acceptance. We need the patients to know their rights and to be willing to have a hard conversation with their doctor, but we also need to educate the doctors … so the patients feel comfortable discussing it and the doctors feel comfortable prescribing or referring them to someone who will prescribe it,” DeWitt says.

After Kathy Myers’ story made headlines, Herb Myers’ phone rang constantly with people asking for help finding a doctor. Those calls don’t come anymore as the process in Colorado has gained more acceptance. And while he misses his wife of 38 years, he has no regrets.

“Anything else we did would have just prolonged her life and her suffering. I think it was the right thing to do,” he says. “I think everybody should have the right to go the way they want.”

Talking About Death

Sarah Farr is an end-of-life doula in the Washington, D.C., area. While doulas are better known for providing help for births, Farr hosts regular meetings known as “Death Cafes” for people to discuss this once taboo topic. Other end-of-life doulas work one-on-one with people who are dying, helping them memorialize their lives and plan their deaths.

“I think in America, we live in a very youth-centered culture, a very kind of anti-aging culture. There’s a lot of denial of death. We don’t usually see people die in our homes anymore,” Farr says. Becoming and end-of-life doula has become popular, with 18 training sessions being held around the country in 2018 alone, according to the International End of Life Doula Association.

According to Deathcafe.com, on any given day there could be half a dozen such meetings around the country. Farr put out chairs for 15 at the last gathering she hosted; 50 people showed up. Discussions run the gamut of death-related concepts, and attendees range from young people to the elderly. Most have experienced a death, and Farr sees them looking for some control over what is essentially uncontrollable: their own deaths.

“A lot of people want to maybe share stories of a death they witnessed. People say, ‘If I could have a say in it, this is how I’d want to die,’ ” she says.

“Choosing [the] day and time of our deaths; it’s just something we don’t have control over. But that doesn’t mean we can’t plan for it if it was to happen, in terms of using hospice care, dying in a hospital versus dying at home, exploring different things you can do with your body after you die, discussing home funerals.”

Of course, a “good death” could be something different for each person. Emily Meier, PhD, a clinical psychologist at UC San Diego Health, recently studied research from around the world on death and identified 11 core themes for a good death. Among these were a lack of pain, religious and emotional well-being, a feeling of life completion, dignity, closeness of family, and quality of life. Being able to die at home is also a strong desire.

Meier said a “good death” is different for each person, but talking about it in advance is the best way to make it happen. No matter the age, she encourages people to prepare advance directives, wills, and other end-of-life documents and share their wishes with loved ones.

“If the conversations are ongoing, and even when you’re healthy, if you have conversations about, ‘What’s most important to me at this point in my life?’ a lot of those things are going to stay the same at the end of life,” Meier says. “The more we talk about it earlier, the less scary it becomes because it’s very challenging to have those conversations in the last moments and trying to scramble together to make sure people are having, so to speak, a good death.”

The Hospice Alternative

Most people think of hospice as a place people go to die. At Alive Hospice in Nashville, it’s where they go to live as well as possible until they die.

Chief medical officer Robert Berkompas, MD, said the nonprofit hospice has only 55 beds but treats 4,000 patients a year with a prognosis of 6 months or less to live. Most of the care is done at home by a team of nurses, doctors, counselors, and others who work in a variety of health care fields.

“We actually ask them: What are their expectations? What are their desires? It’s fairly common they don’t want to suffer physically, with pain and nausea and swelling, so we address all that,” Berkompas says.

But what if they only want to stay alive long enough for an upcoming wedding? What if their treatment plan has side effects that make their final days unbearable?

“We let the patient direct as much of their perception of what a good death would be and work with that,” he says. “If we can give them a great deal of control within the hospice environment, I hope we’re giving them the best of both worlds.”

As a doctor trained to always fight illness, it required a change of philosophy. Berkompas works with other doctors to help them get away from the treat-at-all-costs approach.

“When we say, ‘I really don’t have any more treatment for that illness that is effective or promising,’ I can say, ‘But I still have a treatment for you.’ It’s going to be helping you through this process of dying, and hopefully it will be a good death and not spending your final days in an ICU or a hospital.”

For David Wood, whose wife declined aggressive treatment for her terminal cancer, Alive Hospice made all the difference in making her final months bearable. Nurses visited the home every other week, giving her medication to deal with the pain. And when she couldn’t get out of bed on her own, a nurse came. If he had questions at 2 a.m., he called and someone from the hospice answered. It gave him the confidence to keep her in the house and be her caregiver until the end.

It was the most intimate time in their 43 years of marriage.

“She wanted me to live again, to love again, to play again,” said David, who has since remarried.

“She was comfortable. She told me, ‘David, I am not scared about where I’m going because I know who I’m going to.’ ”

“Hospice just gave me and her the confidence to have a good death. To me, it’s to make the transition from this world to the next.”

Complete Article ↪HERE↩!

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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↩!

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Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

  1. Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
  2. Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
  3. Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
  6. If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
  7. If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—Christopher Stookey, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

  • Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
  • Browse peer-reviewed, academic-journal articles on the subject.
  • Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

 


 

Note: With the exception of quotes, information in the following sections has been adopted from End of Life Washington.

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—Ann Jackson

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article ↪HERE↩!

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The VSED Exit

A Way to Speed Up Dying, Without Asking Permission

By Paula Span

Del Greenfield had endured repeated bouts of cancer over four decades, yet kept working as a peace activist in Portland, Ore., into her 80s. “She was a powerful force,” said her daughter, Bonnie Reagan.

But in 2007, Ms. Greenfield was struggling. She had been her husband’s caregiver until he died that year at 97, never telling her family she was feeling miserable herself. She’d lost much of her hearing. She required supplemental oxygen.

When she fell and broke an arm, “that was the final straw,” her daughter said. “She was a real doer, and she couldn’t function the way she wanted to. Life wasn’t joyful anymore.”

At 91, Ms. Greenfield told her family she was ready to die. She wanted a prescription for lethal drugs, and because she had active cancer, she might have obtained one under Oregon’s Death with Dignity statute for people with terminal illnesses.

Then her son-in-law, a family physician who had written such prescriptions for other patients, explained the somewhat involved process: oral and written requests, a waiting period, two physicians’ assent.

“I don’t have time for that,” Ms. Greenfield objected. “I’m just going to stop eating and drinking.”

n end-of-life circles, this option is called VSED (usually pronounced VEEsed), for voluntarily stopping eating and drinking. It causes death by dehydration, usually within seven to 14 days. To people with serious illnesses who want to hasten their deaths, a small but determined group, VSED can sound like a reasonable exit strategy.

Unlike aid with dying, now legal in five states, it doesn’t require governmental action or physicians’ authorization. Patients don’t need a terminal diagnosis, and they don’t have to prove mental capacity. They do need resolve.

“It’s for strong-willed, independent people with very supportive families,” said Dr. Timothy Quill, a veteran palliative care physician at the University of Rochester Medical Center.

He was speaking at a conference on VSED, billed as the nation’s first, at Seattle University School of Law this month. It drew about 220 participants — physicians and nurses, lawyers, bioethicists, academics of various stripes, theologians, hospice staff. (Disclosure: I was also a speaker, and received an honorarium and some travel costs.)

What the gathering made clear was that much about VSED remains unclear.

Is it legal?

For a mentally competent patient, able to grasp and communicate decisions, probably so, said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. His research has found no laws expressly prohibiting competent people from VSED, and the right to refuse medical and health care intervention is well established.

Still, he pointed out, “absence of prohibition is not the same as permission.” Health care professionals can be reluctant to become involved, because “they want a green light, and there isn’t one of those for VSED,” he added.

The question grows much murkier for patients with dementia or mental illness who have specified VSED under certain circumstances through advance directives. Several states, including Wisconsin and New York, forbid health care surrogates to stop food and fluids. (Oregon legislators, on the other hand, are considering drafting a bill to allow surrogates to withhold nutrition.)

The question intrigues bioethicists. Can your current competent self cut off nutrition and hydration for your future demented self? In a handful of court decisions, judges have declined to enforce such directives.

Can VSED be comfortable and provide a peaceful death?

“The start of it is generally quite comfortable,” Dr. Quill said he had found, having cared for such patients. The not-eating part comes fairly easily, health professionals say; the seriously ill often lose their appetites anyway.

Coping with thirst can be much more difficult. Yet even sips of water prolong the dying process.

“You want a medical partner to manage your symptoms,” Dr. Quill said. “It’s harder than you think.”

Keeping patients’ mouths moistened and having aggressive pain medication available make a big difference, health professionals say.

At the conference, the Dutch researcher Dr. Eva Bolt presented results from a survey of family physicians in the Netherlands, describing 99 cases of VSED. Their patients (median age: 83) had serious diseases and depended on others for everyday care; three-quarters had life expectancies of less than a year.

In their final three days, their doctors reported, 14 percent suffered pain, and smaller percentages experienced fatigue, impaired cognition, thirst or delirium.

Still, 80 percent of the physicians said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time from the start of their fasts until death was seven days.

Those results mirror a 2003 study of hospice nurses in Oregon who had cared for VSED patients. Rating their deaths on a scale from 0 to 9 (a very good death), the nurses assigned a median score of 8. Nearly all of the patients died within 15 days.

The slower pace of death from fasting, compared with ingesting barbiturates, gives people time to say goodbye and, for the first few days, to change their minds. Several conference speakers described patients who had fasted and stopped a few times before continuing until death.

That’s hard on families and caregivers, though. And slowness won’t benefit people who are dying with severe shortness of breath or pain. “Two weeks is a lifetime in that situation,” Dr. Quill said.

Other obstacles could restrict VSED. A quiet choice in a private home, it could be derailed in nursing homes and assisted living facilities where administrators fear lawsuits or regulatory sanctions. Physicians might decline to participate; home care aides might quit.

Moreover, major religious groups have yet to declare whether they consider VSED an acceptable act of self-determination or a suicide, anathema in most faiths.

Phyllis Shacter and her husband, Alan Alberts, a computer scientist who received a Alzheimer’s disease diagnosis in 2011, had few doubts, however. VSED allowed him to escape the disease that had slowly killed his mother.

No state allows a person with dementia to use a “death with dignity” law, but with support from his wife, doctor and two caregivers, Mr. Alberts, 76, died peacefully at home in 2013 after a nine-day fast.

“I’m glad my husband fulfilled his desire not to live into the final stages of Alzheimer’s,” Ms. Shacter said.

On the other hand, Judith Schwarz, clinical coordinator of End of Life Choices New York, told of an 81-year-old attempting VSED with inadequate pain medication, crying out to his wife at night, “I’m dying of thirst.”

“And of course, he was, but slowly,” Dr. Schwarz said. “This was a horror show.”

Del Greenfield fared better. “She didn’t use any medicines, just some oxygen,” her daughter said. Ms. Greenfield’s children, grandchildren and great-grandchildren came to see her, and “she was completely peaceful, chatting and joking and telling people she loved them.”

She announced that she had one regret. “We all leaned in,” Bonnie Reagan said. “And she said, ‘I wish I’d seen the Rolling Stones the last time they came to Portland.’”

On the fifth day of fasting, “she just fell asleep,” and died about 36 hours later.

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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.

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