Imminent Death – Page 13 – The Amateur's Guide To Death & Dying

October 14, 2015

California Doctors Get Advice On How To Provide Aid In Dying

doctor-consultation — Doctors may get questions about dosing and timing of medication from patients considering aid in dying.

By April Dembosky

Now that California has legalized aid in dying, advocacy groups are planning statewide education campaigns so doctors know what to do when patients ask for lethal medication to end their lives.

One of the first stops for doctors new to the practice is a doctor-to-doctor toll-free helpline. It’s staffed by physicians from states where the practice is legal, who have experience writing prescriptions for lethal medication.

“We try to answer any doctor’s phone call within 24 hours,” says David Grube, a retired family doctor in Oregon who accepts calls. “I might answer questions about the dose of medicine, the timing of the giving of the medicine, things to avoid, certain kinds of foods.”

Grube recommends prescribing a specific dose of sleeping pills, along with anti-nausea medication. People usually fall asleep within five minutes after taking the drug, and usually pass away within an hour.

This kind of information will also be shared in training sessions, online and at hospitals and medical schools throughout the state before and after the law takes effect in 2016. The precise date is not set; it will take effect 90 days after the end of the ongoing special legislative session.

“Health care systems should start preparing now for their patients who are going to be requesting, and demanding, information about the End of Life Option Act,” says Kat West, policy director for Compassion & Choices, the advocacy group that led the charge for legalization in California and is spearheading the education campaign.

She says a few health care systems in California have called their counterparts in Oregon, where the practice has been legal since 1997, to find out how they have implemented the law there. For example, Kaiser Permanente in Oregon and Seattle Cancer Care in Washington hired patient advocates specifically to respond to requests for aid-in-dying medication and to guide patients and doctors through the process.

Medically-assisted suicide is also legal in Vermont and Montana. But West says California has some key differences that will influence implementation here.

“The challenge, of course, is California is so big,” West says. But “in some ways, California is in a better position to start implementing aid-in-dying, because the infrastructure is already good and in place.”

Opponents have vowed to try to block the law from taking effect.

A group calling itself Seniors Against Suicide filed paperwork this week to put a referendum before voters in November 2016, asking them to overturn the new law. The group needs to collect 365,880 signatures by January to qualify for the ballot, though it’s unclear if they have enough money to run a statewide campaign.

In Oregon, the law was delayed from taking effect for three years because of a lawsuit filed by the federal government. But West says that was 20 years ago, and is unlikely to happen in California.

Californians Against Assisted Suicide, a coalition of religious groups and disability rights advocates who fought the law through the legislative process, says it has not yet decided whether it will sue to stop the law from going into effect.

California’s department of public health will be required to collect and store data about who requests the lethal drugs, and who takes them.

Complete Article HERE!

October 13, 2015

UK is the best place in the world to die, according to end-of-life care index

Integration of palliative care into NHS and strong hospice movement among reasons for UK ranking first in study of 80 countries

The UK is the best place in the world in which to die, according to a study comparing end-of-life care in 80 countries.

The integration of palliative care into the NHS, a strong hospice movement largely funded by the charitable sector, specialised staff and deep community engagement are among the reasons cited by the Economist Intelligence Unit(EIU).

The upper echelons of the index are dominated by wealthy European, Asia-Pacific and north American countries. Australia is second, New Zealand third and Ireland and Belgium complete the top five.

Annie Pannelay, of EIU healthcare, said: “A very strong marker in our index is the availability of specialised palliative care workers and this is where the UK scores particularly well. The UK has a long history of providing treatment in palliative care. The other super strong marker is the way that the countries do have a plan for palliative care. That means they are on the dynamic of measuring progress and improving.”

The US is ninth in the index. Taiwan is the highest Asian country, placing sixth, while India and China rank 67th and 71st respectively. Their performances were described as worrying in light of their huge populations, with China of particular concern given that “the impact of the one-child policy, often leaving individuals caring for two parents and four grandparents, will lead to even more demand for outside resources to provide support”.

Among the countries that fare well despite being less wealthy and having less well developed healthcare systems are Mongolia and Panama, 28th and 31st on the index respectively. Mongolia’s performance was attributed to an individual doctor who has driven an increase in palliative care.

Despite the UK’s top ranking, the study’s authors say it is “still not providing adequate services for every citizen”. They highlight an investigation by the parliamentary and health service ombudsman into complaints about end-of-life care, published in May, which raised issues including poor symptom control, poor communication and planning, failures to respond to the needs of the dying, inadequate out-of-hours services and delays in diagnosis and referrals for treatment.

Pannelay said: “There are some concerns but there is a plan to improve and the single fact that there is a parliamentary report on that and it’s available publicly means a lot – that means the UK is working on it.”

The UK received the top score in the indicator measuring financial burden to patients, indicating that 80% to 100% of end-of-life care services are paid for by sources other than the patient, much of it from charitable funding.

The authors praise the Dying Matters Coalition set up by the National Council for Palliative Care charity in the UK to encourage people to talk more openly about death and make plans for the end of life.

The EIU says the UK’s resources, like those of other countries, will be stretched in future by an an ageing population and non-communicable diseases including cancer, dementia and diabetes.

The authors say recent third-party research demonstrates a significant link in the use of palliative care and treatment cost savings. Despite evidence of the economic benefits, they point out that only about 0.2% of the funds awarded for cancer research in the UK in 2010 went to research into palliative care, while in the US it was 1% of the National Cancer Institute’s appropriation.

The Quality of Death Index, commissioned by the Lien Foundation, a Singaporean philanthropic organisation, is based on qualitative and quantitative indicators and took in interviews with more than 120 palliative care experts from around the world.

The UK came top in the only previous index, produced in 2010, although that was limited to 40 countries and the criteria has since been refined.

Complete Article HERE!

October 10, 2015October 11, 2015

To Die At Home, It Helps To Have Someone Who Can Take Time Off Work

dying-at-home — Having a loved one take at least two weeks off work increased the likelihood that terminally ill cancer patients could die at home.

By Lynne Shallcross

When a family member of mine was dying of cancer, her husband’s boss told him to take all the time he needed to care for her. She was granted her wish of being at home when she left this earth, surrounded by those she loved most.

But a wide base of support is needed in order for a patient’s wish to die at home to be made real — including, in some cases, whether someone can take time off work to be with their loved one in their final days, a study finds.

Terminally ill cancer patients whose relatives took at least two weeks off work in the three months preceding their death had a greater likelihood of dying at home, compared with patients whose relatives took no more than three days off.

The study, which was published in BMC Medicine on Thursday, looked at the deaths of more than 350 cancer patients in London. Using feedback from those patients’ loved ones, researchers found that four factors could explain 91 percent of deaths that occurred at home: patient’s preference, relative’s preference, home palliative care or district/community nursing.

Having a comprehensive home-care plan in place is crucial, says lead author Barbara Gomes, a research fellow at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s College London. That should include specialist palliative care services and the availability of around-the-clock nursing. The number of home doctor visits also increased a patient’s chances of dying at home.

But researchers also identified three factors that had been previously overlooked yet still weighed into whether a patient died at home: the length of time in which the family knew the patient’s illness was incurable; discussion of the patient’s preference with family; and the number of days family members took off work in the three months before the patient’s death.

There are a variety of possible explanations for the connection between relatives’ days off work and a loved one’s at-home death, but Gomes is careful to point out that this retrospective, observational study can’t draw a cause and effect on this point.

Some governments have recognized the importance of being with a loved one who is dying and have set up support programs to better facilitate family caregiving. Gomes points to a compassionate care benefit in Canada, which offers employees a paid employment insurance program if they need to care for a gravely ill loved one.

Only three states have paid family leave policies: California, New Jersey and Rhode Island. Both Washington, D.C., and the state of New York are considering paid family leave legislation, and the FAMILY Act was introduced in Congress this year with the goal of providing a national paid family and medical leave insurance program.

David Bolotsky, founder and CEO of the online marketplace and retailer UncommonGoods, provides his employees at the Brooklyn-based company with paid leave. Not all American workers are so lucky: Every company has a different policy and different leave benefits. Although many workers are eligible for the federal Family and Medical Leave Act to care for a child, parent or spouse with a serious health condition, that leave is unpaid, which can make it financially impossible.

Bolotsky argues for providing paid family leave to all employees, as he did recently in an op-ed in support of the New York bill. “For most of us, nothing is more important than our families,” he says. “The folks who raised us ought to be able to have a dignified passing, and being able to be there with your loved ones is really important.”

The British study also found that dying at home was more peaceful for the patient and led to less grief among their loved ones. And the people who died at home didn’t experience more pain than those who were in a hospital.

Though health care should ideally be patient-centered, Gomes says remembering the crucial role that relatives play in the decision-making process and in the actual caregiving is important.

She recommends that health care providers encourage the patient and loved ones to discuss preferences for where the terminally ill patient will die, as well as acknowledge that preferences may change as time goes on.

Providers should also help the patient and relatives become aware of the medical supports and services available to them, along with explaining that staying at home to die may not be medically feasible.

Complete Article HERE!

October 8, 2015October 9, 2015

Doula for the dying: Connecting birth and death

BY AMY WRIGHT GLENN

Amy Doula Dying — Daughters of 97-year-old Utah native William Vance Wright hold vigil.

The last time I saw my grandfather, he was 95 years old. He walked with a bent back. Kindness graced his watery eyes.

During dinner, he asked me how old my son was at least four times.

“Is he 2?” he inquired once again.

“Almost. He’s 21 months, Grandpa,” I answered.

He smiled and returned to eating his tilapia, mashed potatoes and squash.

At the end of our visit, I walked him to the car. As we approached the steps leading down to the garage, he mentioned his bad knee – an injury from the war.

“I can do it,” he said, gently refusing my hand. “Just one step at a time.”

As my uncle opened the car door, my grandpa suddenly stopped. He turned back to look at me. He kissed his hand and lifted it up in the air. I blew a kiss back to him. He “caught it,” then brought it to his cheek with a knowing smile.

The last time I saw my grandfather, he blew me a kiss. That is what I remember most.

Doulas and Dying

I am a doula. I am also a hospital chaplain. In holding space for birthing and dying, I’ve come to see one thing clearly. Standing with an open heart in the presence of birth is very much like standing with an open heart in the presence of death.

The word “doula” translates from Greek to mean “woman servant.” Today, doulas are known best for accompanying laboring and/or postpartum women. Doulas offer emotional, mental, spiritual and physical support during the transition of opening to new life. According to a 2013 nationwide survey conducted by Listening to Mothers, around 6 percent of expectant couples in America hire a birth doula. This number is small, but it’s growing. In 2006, only 3 percent of birthing women had doula support.

The vast majority of American women give birth in a hospital. Given this, the compassionate and consistent presence of a doula offers a healing tonic in an impersonal and medicalized obstetrical setting. Doulas focus solely on providing comfort measures, based on best practices, to ease the pain of labor and steady the heart and mind of a birthing woman. As a doula, I offer support for hours on end. I do my best to mirror back to a woman her courage, beauty and strength. Doulas believe in the power of birth and regard the process of birth as sacred.

What happens when we take the doula model described above and apply it to end-of-life care? What if we doula the dying?

Like with birth, the majority of Americans die in a hospital. While the majority of us wish to die at home, according to the National Center for Health Statistics, only 27 percent of Americans do. Most of us are born and die surrounded by medical professionals and beeping machines. Ideally, the technology associated with important medical advancements doesn’t eclipse the perennial needs of the human heart. Women birth best when they feel safe, are supported, and their bodies are allowed to open with organic wisdom. In the same way, the dying are best comforted with human touch, love, story and song.

In 2003, Henry Fersko-Weiss, a licensed clinical social worker, created the first end-of-life doula program in the U.S. He saw that there was “a gap” that hospice and medical professionals couldn’t fill when it came to supporting the dying and the bereaved. He trained with Debra Pascali-Bonaro, creator and director of Orgasmic Birth and chair of the International MotherBaby Childbirth Organization. Fersko-Weiss transferred knowledge gained about birth doula work to caring for the dying. As president of the International End of Life Doula Association (INELDA), he trains hundreds of individuals, drawing upon his studies of the intersectionality of birth and death work. Today, a small but growing number of organizations wisely build upon the doula model and offer training to support the dying and bereaved.

Fersko-Weiss is unique. Few end-of-life care professionals are trained in birth work. Few birth workers are trained in caring for the dying. Yet, uncanny similarities in best practices exist across these professions. At the October 2014 Midwives Alliance of North America annual conference, I spoke about the overlapping skill set taught in both my training as birth doula and hospital chaplain.There is much to be gained from studying what it means to hold space for both birth and death.

Holding Space

“That sure looks like my brother Darcey,” my grandpa said a few days before he died. His eyes gazed across his room. Then, he added, “Hi Mom. Will you stay close to me today?”

Will you stay close to me today?

When the veil between our visual world and the wonders beyond the physical senses thins, we seek out the hands of loved ones. Whether a mother holds these hands as she bears down to push a beloved child into our world, or whether an elderly woman holds the hands of her children as she breathes her last breath — we reach for each other. We do.

Wisdom and insight are born when we stay close to the birthing and dying. Wounds from the past can be healed. Forgiveness and perspective dawn. Our culture is currently fragmented from much of this wisdom. The training of doulas represents a healing shift. By holding compassionate and nonjudgmental space, doulas support families as they make room for the generations to enter and exit this world. As we attend to birth and death, we touch upon a great mystery and deeply benefit from being starkly reminded of our own mortality.

During my grandfather’s final days, his grandchildren and great-grandchildren came to his bedside. While he received quality and attentive hospice support, it was the consistent and compassionate care of his seven children that mattered most. In particular, my Aunt Colleen’s remarkable devotion to her father made it possible for him to live out his final years and eventually take his final breath in the comfort of his own home. She was his doula.

While the birth/postpartum doula movement makes important inroads in our maternity care system, great commitment and insight are needed to bring doula care to the dying. The elderly are easily disregarded in a culture that worships youthfulness, independence and productivity. Like infants, the dying remind us of our fragility, our dependency and our need for each other. When we sequester either birth or death, we lose touch with the truth of our interdependence, the nesting of generations, and what Buddhist teacher Thich Nhat Hanh calls our “interbeing.”

‘Just one step at a time’

As I work to train death doulas, hold space for the birthing and meditate on the mysteries that connect the threshold points of life, I remember my grandfather’s words: “Just one step at a time.” Yes. Just one birth, one death, one step at a time.

Slowly, steadily, the doula movement brings needed healing to how we perceive and experience both birth and death. Holding compassionate presence in our most fragile moments reminds us of what matters most. Certainly, it’s not what we possess. Even the location of birth or death is secondary. It’s the presence of love and the gentleness we bring to our mortal journey that matter most.

The last time I saw my grandfather, he blew me a kiss. I hold it close to my cheek. It inspires me to do this work.

Complete Article HERE!

October 7, 2015

Inmates Help Other Prisoners Face Death in Hospice Program

By Andrew Welsh-huggins

Inmate Scott Abram sings to a fellow inmate who is dying and is spending his last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. (AP Photo/Andrew Welsh-Huggins)

As late-morning sun streams through narrow prison windows, convicted killer Scott Abram stands beside a fellow inmate, speaks quietly to him and starts singing “Amazing Grace.” The prisoner appears to smile, but it’s difficult to gauge his response. He is dying.

He passes away two days later in early September.

Abram is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. Behind bars since the early 1990s for murder, he has gotten used to spending time with male prison friends as they die in rooms 205 or 206 on the second floor of the state’s prison for chronically ill inmates.

“We’re all human, and we make mistakes,” said Abram, sentenced to 15 years to life. “There are some that make bigger mistakes, like me. I make a lot of mistakes each day.”

Abram, 48, is a Stephen Minister, a type of lay counselor common in churches around the country but rarer inside prison walls. He is one of 15 male and female inmates trained in the program at Franklin Medical Center, a small prison just south of downtown Columbus that houses some of the state’s sickest inmates, many of whom die there.

Abram’s hospice work is just part of his Stephen Minister counseling. He and others also work with troubled inmates, perhaps helping them write a letter or make a call.

In Ohio and nationally, the inmate population is graying. Ohio had 8,558 inmates over 50 this year, nearly double the number in 2001. Other states, including Louisiana, Iowa and California, have similar prison programs.

Prisoner Sheila Belknap says her participation also makes her think about her own mistakes. Belknap, 42, plans to continue hospice work after she is released next year from a four-year term for theft charges. She calls her work with the dying a privilege.

A prison official points out a handmade quilt featuring the names of inmates who have died in prison hospice at the Franklin Medical Center, on Friday, Sept. 11, 2015 in Columbus, Ohio. Inmates trained in a counseling program called Stephen Ministries help fellow prisoners in their last days. (AP Photo/Andrew Welsh-Huggins)

“It’s just the satisfaction I get just from being there at the time of need,” she said. “No one wants to pass alone.”

Nos. 205 and 206 — there is also a room in another unit for female patients — resemble ordinary hospital rooms. Hanging wall quilts made by volunteers soften the institutional feel. Abram and Belknap are often joined by members of a Columbus choir that sings to hospice patients around central Ohio.

The Department of Rehabilitation and Correction hopes to expand the number of Stephen Ministers at other prisons, though hospice care would remain in the Columbus facility.

On average, an Ohio inmate dies of natural causes every three and a half days, not unexpected with a statewide prisoner population of 50,000, the size of a small city.

The national Stephen Ministry office in St. Louis is unaware of other state prisons with inmates trained in their counseling program.

Louisiana began an inmate hospice program in 1997 at the state penitentiary in Angola and developed a 40-hour training program for offenders, who volunteer for four-hour shifts with dying prisoners. California says it established the nation’s first inmate hospice at the California Medical Facility in Vacaville in 1993.

Inmate Scott Abram, holding a training dog, Ziva, talks about his work counseling fellow inmates including some who are dying and spending their last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, also trains puppies that may end up as pilot dogs. (AP Photo/Andrew Welsh-Huggins)

The program at the Iowa State Penitentiary in Fort Madison, Iowa, was the subject of “Prison Terminal: The Last Days of Private Jack Hall,” a documentary by filmmaker Edgar Barens that received a 2014 Academy Award nomination.

“It not only helps the prisoner who’s dying of a terminal illness, but it’s so redemptive for prisoners who go through the process of becoming hospice workers,” said Barens, a visiting media specialist at the University of Illinois at Chicago. “It’s tenfold payback when a prison does this.”

Complete Article HERE!

October 1, 2015September 30, 2015

Explaining Withholding Treatment, Withdrawing Treatment, and Palliative Sedation

By: Romayne Gallagher MD, CCFP

Three terms that may arise in end-of-life care discussions are ‘withholding treatment’, ‘withdrawing treatment’ and ‘palliative sedation’. They are often misunderstood and sometimes confused with physician-assisted suicide or euthanasia. Understanding these terms can assist in decision-making and ensuring quality of life.

Palliative care is about achieving the best quality of life until the end of life. Each person’s situation, experience of illness, goals of care and approach to care are unique. Many factors influence the decision to withhold treatment, withdraw treatment or make use of palliative sedation. Each requires discussion and agreement between the patient and health care providers. If patients are not able to participate in these discussions, family members or substitute decision-makers are involved on their behalf.

Withholding treatment and withdrawing treatment

Traditionally, medicine has been focused on extending life. However as death approaches, extending life may not be in the best interests of the patient. A number of treatments and interventions can artificially extend life at end of life: certain medications, artificial nutrition, treatments such as dialysis, transfusions, radiation, and ventilation for breathing. It is important that patients and families understand the intent and possible risks or benefits of the care they are receiving. In Canada, people with advanced illness, or their substitute decision-makers, who are properly informed and able to make health care decisions can stop or decline treatment, even if that treatment might prolong life. While withholding treatment and withdrawing treatment refer to actions taken by health care providers, the actual decision to decline or discontinue treatment rests with the patient or the patient’s family or substitute decision-maker. Declining or discontinuing treatments that artificially extend life doesn’t mean that symptom control such as pain management and emotional support stop. Care and treatment focused on maintaining comfort continue, allowing the person to die naturally from the disease.

The first three cases below are examples of withdrawing and withholding treatment in the case of advanced disease. The cause of death in each case is the underlying illness. The intention of the plan for care is to treat symptoms and keep the patient as comfortable as possible but not prolong the natural dying process.

Case 1

Withdrawing treatment: Linda wants to stop dialysis

Linda has had diabetes for many years and has developed kidney failure. She has been on dialysis to keep her kidneys functioning. Because of dialysis, she has lived long enough to see the birth of her great grandchild eight months ago. But Linda is now growing weaker; she can do less for herself and always feels tired, especially on her dialysis day. It is getting more difficult for her to get back and forth to the dialysis clinic, and she now thinks dialysis is only prolonging her dying. After discussing her thoughts and feelings with her adult children and health care team, Linda decides to stop the dialysis treatment. The health care team controls Linda’s symptoms caused by kidney failure and she dies two weeks later with her family at her side.

Case 2

Withdrawing treatment: Jorge wants to stop transfusions

For three years, Jorge has had leukemia, a cancer of his blood. The cancer has filled his bone marrow to the point that he can no longer make enough red blood cells to live without transfusions. Similarly, Jorge can no longer make enough white blood cells, so he has had a number of infections. At first, his body could fight off these infections with the help of antibiotics. Then he would feel better and have enough energy to enjoy his photography hobby and his life with his partner. But after the last few infections, Jorge’s energy has not returned enough for him to go out and take photographs. He spends most of his day sleeping and has found it harder to go to the hospital for blood transfusions. His partner and friends are willing to help him with everything. But he is struggling with feeling so dependent.

Jorge talks with his health care team about how his life is now. “I can’t take this anymore,” he says. His team reminds him that he can always decide not to treat another infection when it comes along. He has the right to say no to antibiotics since they no longer help him recover from the infections. He can also stop his transfusions if they no longer help. He has the right to decide to stop all treatments and let nature take its course. Jorge decides to stop the transfusions and to not receive antibiotics if he gets another infection. Jorge’s partner supports his decision. She has noticed changes in Jorge and that the treatments are no longer making him feel better. Two weeks later, Jorge gets an infection. He experiences some shortness of breath but his team controls it with small doses of pain medication. He dies peacefully several days later.

Case 3

Withholding treatment: Marjorie’s family declines life-prolonging treatments

Marjorie is a frail older woman living alone in her own home. She has always told her nephew and niece that if she can no longer live there and manage her own affairs, she doesn’t want to live long. “Don’t put me on machines if I am going to end up being spoon fed,” she has said. One day, in terrible pain from a sudden, dreadful headache, she calls her nephew. Her speech is slurred and he can hardly understand her. By the time he gets to her home, she is barely able to respond to him. When the ambulance comes, the paramedics put a tube down her throat to help her breathe. At the hospital, a scan shows Marjorie has had a massive stroke that she is unlikely to recover from. The emergency doctor explains that if she were to have any chance of surviving, the health care team would need to maintain the breathing tube and connect their aunt to a breathing machine. She would also need drugs to reduce the swelling in her brain. It is expected that even if she does wake up, Marjorie will have physical and maybe cognitive impairments, will not be able to live alone, and will need help with all of her care.

Marjorie’s nephew is her next-of-kin and her substitute decision-maker. He knows that she would not want to live if she were unable to be independent in her own home. He asks if there are any other options. The emergency doctor tells him that since she has almost no chance of returning to her former life, Marjorie’s nephew could decide to remove the breathing tube and not to start the medication to reduce the swelling in her brain. The health care team would focus on treating any pain or other symptoms that she might have and allow her to die a natural death. Since that seems most in keeping with Marjorie‘s wishes, her nephew agrees. He and her niece stay with her until she dies 12 hours later.

Case 4

Withholding treatment: Mabel’s family decides against a feeding tube

Mabel is an 88-year-old woman who has lived with dementia for three years. In recent months she has become weaker, unable to walk, spends most of her day in bed and is having increasing difficulty swallowing food or fluids without coughing. Her daughter worries that she will “starve to death”. The doctor and staff share information with her daughter about the typical course of dementia, and how interest and intake of food and fluids diminishes. After talking with the staff and reading articles on this topic, the daughter understands the natural progression of dementia and that her mother will not experience hunger. She agrees to focus on good end-of-life care that includes sips of fluids or careful hand feeding if her Mom is awake and able to safely swallow, or good mouth care to prevent dryness.

What About Food And Fluids?

Towards the end of a progressive, life-limiting illness, people reach a point where they can no longer eat or drink. They may be too weak and unable to swallow, or always sleeping. When people become too weak to swallow, they may cough or choke on what they are trying to eat or drink. Providing food and fluids at this point usually requires a feeding tube. These tubes can be placed through the nose into the stomach, or they can be surgically placed directly into the stomach through a hole in the wall of the abdomen. At such an advanced point in an illness, our body systems are shutting down and our bodies are not able to use the calories in food. People understandably may be concerned that if someone is not being fed, they are being ‘starved to death’. However in these situations, it is the illness that determines the point where food can no longer be taken in; even if it could be, the body would not be able to use it to become stronger or to live longer. Hunger tends to be absent, and the sensation of thirst is typically related to dryness of the mouth, which can be addressed with good mouth care.

Feeding with the help of medical devices – including feeding tubes – is a medical procedure, similar to providing antibiotics or blood transfusions through an intravenous (“IV”). Therefore, when an advanced illness progresses to the point that someone can no longer eat or drink, the person or substitute decision-maker can indicate that a feeding tube is not wanted as it would only artificially prolong the final phase of illness.

This is a controversial and emotional issue as providing food and fluids feels like a basic way people nurture and care for each other. Nonetheless, patients and substitute decision-makers have the right to decline medical or surgical procedures such as inserting feeding tubes and other medical devices.

Palliative sedation

Palliative sedation involves giving medications to make a patient less aware, providing comfort that cannot be achieved otherwise. A legal and ethical practice in Canada, its goal is not to cause or hasten death but to keep the person comfortable until death. The decision to begin palliative sedation is made after an in-depth conversation between the patient (if able) or the family or substitute decision-maker, and the physician. Palliative sedation is considered a last resort in the last days of life, when all possible treatments have failed to relieve severe and unbearable symptoms such as pain, shortness of breath, or agitation from confusion.

While the person is sedated, the health care team monitors and reviews his or her condition and comfort and the family’s reaction to the treatment. The medications and dosages can be adjusted, resulting in a range from a slight calming effect to full sleep. The sedation can also be reversed, so the person is not completely asleep during the dying process. Research has shown that palliative sedation does not shorten life. People die from their disease – not from sedatives.

The two cases below are examples of how palliative sedation eases suffering and keeps a person comfortable until he or she dies from disease.

Case 5

Palliative sedation: Jim is confused, agitated and frightened

Jim has severe liver failure from hepatitis C. He can’t have a liver transplant because of other medical problems. His liver is not cleaning his blood as it should and toxins are building up in his blood. The toxins are causing confusion and in the end will cause death in less than a week. Until two days ago, Jim was able to understand and agree to his treatment. Now, he tries to get out of bed during the night, doesn’t recognize his family, and is agitated and frightened. Jim’s family is distressed.

Jim’s health care team does some tests to see what is causing his confusion and agitation. The team finds that his liver function is extremely poor, and there are no other causes for his distress they can correct. This type of confusion is called delirium. Since the medications usually used to control mild to moderate delirium are not effective, the health care team and Jim’s family meet to discuss further treatment. The health care team recommends sedation to allow Jim to rest in bed and feel calm. The family agrees and the medication is given. Jim receives enough medication to help him lie peacefully in bed, and sleep comfortably. On the third day, the team reduces the medication, but Jim again becomes restless and agitated, so the medication is increased to the point where he is resting comfortably. Jim dies comfortably from his illness on the fourth day with his family at his bedside.

See also: Confusion

Case 6

Palliative sedation: Roberto wants to see his children one last time

Roberto has cancer which has spread to his liver and lungs. A large tumour in his pelvis where the cancer recurred causes him severe pain. He has received chemotherapy and radiation therapy, and is receiving multiple pain medications. Until two weeks ago, Roberto’s pain was under control. Then he came to the hospital seeking relief. Roberto is becoming weaker every day. He is likely to die in the next week because of the cancer in his liver and lungs. He desperately wants to live until his ex-wife brings his two young children to visit; however they no longer live in the same city. Although the health care team is controlling his pain as much as possible, Roberto is distressed by the pain and the waiting.
The team offers Roberto some sedation to make him unaware of his pain and reduce his distress. They promise they will reverse the sedation when his children arrive. Roberto agrees and the team starts the medication, increasing the dosage until Roberto is able to sleep. Roberto sleeps for a day and a half. When the team knows Roberto’s children are about to visit, they stop the sedation, and he is able to see them for the last time. After their visit, Roberto chooses to be sedated because of his pain. He dies two days later from his cancer.

See also: Pain

Patients and families living with advanced illness will be faced with many decisions related to their care. It is important that they be able to discuss the risks and benefits of possible treatments and interventions with their healthcare team so that they can make informed decisions that are consistent with their goals of care

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September 30, 2015September 30, 2015

Assisted Death Laws Won’t Make It Better to Die in the US

By NICK STOCKTON

SOME PEOPLE JUST want to die. Not because they are trapped by depression, anxiety, public embarrassment, or financial ruin. No, these poor few have terminal illnesses. Faced with six months to live, and the knowledge that the majority of those 180 days will be bad ones, they seek a doctor’s prescription for an early death.

Soon, terminal patients in California could have that option. Currently sitting on Governor Jerry Brown’s desk is a bill that, if signed into law, would allow doctors to prescribe life-ending drugs. Not surprisingly, this is controversial. Proponents believe the law would save diseased people from the worst days of their prognoses. Opponents say the law violates the sanctity of life, and can be exploited by ill-meaning family, physicians, and insurance companies at the patient’s expense.

But there’s a third group who believe this debate misses the real problem: that the American health care system is just an all around miserable place to die.

In the 1990s, Dr. Jack Kevorkian’s name became synonymous with so-called assisted suicide. He argued, famously and flamboyantly, that patients should have the right to euthanasia if the suffering from age, disease, even mental illness overwhelmed their will to live. “The patient’s autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants,” he once said in court.

Kevorkian lost his court battles, and spent eight years in a Michigan prison. But his fight was not in vain. Four states have since legalized physician-aided death (and would-be fifth New Mexico has a law in legal review). The first was Oregon, and its Death With Dignity Act has become the model for the rest. There the patient must first have a six-months-to-live prognosis. Then, the patient has to write a request to the physician (who may refuse on moral grounds). Two witnesses have to sign that request, one of whom is not related to the patient, not in the patient’s will, and not the patient’s physician or an employee of the patient’s health care facility.

If the first doctor approves the request, the patient has to give it to a second doctor, who examines medical records to confirm the diagnosis and make sure the patient has no mental illnesses that might affect his or her decision-making ability. After a fifteen-day waiting period, the patient has to confirm that he or she still wants the doctor’s aid in dying. Only then will the doctor prescribe the lethal prescription. And the patient is under no obligation to take it, either.

In fact, since it was passed into law, only about 65 percent of the 1,327 people prescribed the medication have used it.

Raising the stakes in California

On December 31, 2013, California resident Brittany Maynard had a master’s degree in education, several years of experience teaching abroad in orphanages, and a husband. On January 1, 2014, she had stage two brain cancer. She went through surgery, and the doctors cut away the cancerous parts of her brain. But in April, the disease returned. Stage four glioblastoma, with little hope of treatment. Her doctor informed her she had six months to live.

Given the choice, Maynard said she would rather die before the cancer’s debilitating final stages destroyed her health completely. A few months later, she moved from California to Oregon.

Maynard took her lethal dose of medication on November 1, 2014. Her last message, posted on her Facebook profile, read:

“Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”

Maynard’s broadcasted decision put the public behind California’s bill. Like the other states’ laws, it is modeled after Oregon’s, with some some add-ons meant to assuage opponents. California patients would have to request aid in dying three times instead of twice. “The physician who prescribes the medication must have a one-on-one conversation with the patient, to verify that it is their choice, and that no one is putting any pressure on the patient,” says Ben Rich, a lawyer and expert in end-of-life bioethics, from the University of California, Davis. And after ten years, the law would expire.

Missing the point

But for some in the palliative care community—the doctors, nurses, and caregivers that manage end-of-life care—the battle over aid in dying is a distraction from the real problems that dying people face. “I think it’s a moot debate that’s divorced from the reality of end-of-life care,” says David Magnus, a bioethicist at Stanford Medical School. That reality is clear in a report published last year by the Institute of Medicine of the National Academies of Science.

Titled Dying in America, it showed that patients often can’t get—or don’t know about—the type of treatment they actually need to be comfortable and pain-free in their final months, weeks, days, and hours. This is probably tied to the fact that America only has half as many palliative care physicians as it needs.

That’s not all. Magnus says insurance companies favor big lifesaving efforts and shiny technology. “We put a lot of emphasis on technology and innovations, and this tends to downgrade communication,” says Magnus. And clear communication about death is probably the first prescription is probably what most terminal patients need most.

As a result, patients end up getting treatment that doesn’t help them have a more comfortable death. In fact, it become the opposite. “You’ve got a patient who is sick, going though a roller coaster ride,” says Magnus. This includes cycles of chemotherapy and remission, trips to surgery to intensive care to therapy to home, then back again. “And each time, it’s much more difficult on the patient and on the patient’s family,” he says.

“A lot of what we see are patients who have some sense that their condition is bad but are not told explicitly how bad their prognosis is,” says Magnus. For example, many patients don’t understand the difference between palliative and curative treatments. “When they hear that their condition is treatable, they think there is a chance that they can be cured,” says Magnus. But treatable, to physicians talking to a terminal patient, often mean simply easing that patient’s suffering. Treatable has nothing to do with living or dying.

Palliative communication

Other studies back up Dying in America. Last year, scientists published in the Journal of Oncology that with better communication, more terminal patients might choose hospice rather than more radiation or chemotherapy. A2005 study showed that doctors regularly missed opportunities to convey information to patients that would affect their decisions about end-of-life care. Magnus has also done research on doctor-patient communication, and what he sees is usually pretty dismal.

“The caveat, is it’s very hard to communicate bad news to families,” says Magnus. He says it’s understandable that doctors hedge their discussions towards the positive. This goes back to the end-of-life training that doctors do not receive in medical school.

But until the medical system gets fixed (don’t hold your breath), patients can circumvent the assisted death circus by getting advanced care directives, such as a living wills. These are legal documents that outline how you should be treated in the event of a severe illness, accident, or just plain growing old. “100 percent of us are going to die, and only a quarter of Americans have engaged in formal advanced care planning,” says Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, which advocates that people use April 16 to sit down, discuss, and develop their advanced care plan. The groups website has resources for drafting up the legal documents in every state.

In California, Governor Brown has until October 7¹ to sign the aid in dying bill into law. While he hasn’t tipped whether his pen will enact or veto, he has criticized the legislative gymnastics that let supporters get the bill voted on without first going through scrutiny by committees. Adding to speculation that he may veto, Brown is also a former Jesuit seminarian (Catholic groups oppose the bill).

But the bill has a groundswell of public support. According to a bipartisan public opinion poll, 69 percent of Californians are in favor of physician-aided death. “Why is this touching a nerve? Why is it millions of people want these laws on the books?” asks Magnus. He doesn’t believe it’s because so many people are terrified of having a sickness steal away their preferred choice: Life. Rather, he says it speaks to a more common fears: dying in pain, without control, without dignity, surrounded by people they do not know in a place they do not want to be. The choice that concerns them is not whether to die, it’s how.

¹ UPDATE: Correction 12:12am ET 9/30/2015 The original story said the enactment deadline was September 28. In California, the governor has 12 working days to act on bills (such as the End of Life Option Act) passed in special Assembly sessions. But, that time began when the bill landed on the governor’s desk (which was September 25), not when the bill cleared the Assembly (September 11). If the governor doesn’t sign or veto within that deadline, the bill automatically becomes law.

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