Living like I’m dying


I’m leaning into death to see if I can change how I feel about it.


I imagine I’m not the only person who’s written their own obituary, but maybe I’m the first one to see it in print. Writing my obit was the first task in an exercise that came to an end yesterday.

“Brown, Laurie Jane. (October 7, 1957 – March 4, 2018). Laurie died suddenly yesterday in Toronto at age 60.”

I feel like Scrooge seeing his own gravestone.

I am in perfect health, but having recently turned 60 years old, I am feeling an increasing urgency about, well, everything. Why not give myself the deadline to end all deadlines? On Dec. 4, 2017, I decided I had three months to live. Three months to make more of whatever time I have left.

So for the past three months I have been thinking about death everyday. “Is this the last time I hand wash this sweater? Is this the last time I talk with my son?” It was jarring, but I kept going. I wanted to get to a less anxious feeling about my own mortality. By trying to live as if I was dying, would I live each day differently? Might that take some of the sting out of my impending death? Is that even possible?

The first thing anyone with three months to live is told to do is “get your affairs in order.” I updated my will and my living will. Next, I collected all my banking and legal information and printed it. (Kids – it’s in a bankers box on the floor of my closet, along with the full obituary.)

I started my death exercise without telling anyone. Good thing – I could have ruined a few dinner parties. I did let one girlfriend in on it and her response was “March is still too cold to stand by your grave. Can you make it May?”

With two months left on the calendar, I flipped between two very different states of mind. On a good day? I believe I’ve had a full life, a lucky life and I’m good to go right now. But on a bad day, it’s a different story: I want to be a grandmother, I want to create more, I want to grow old. My children need me and my new partner needs me. I couldn’t bear to contemplate the end of a love I had barely begun.

I never used to think about death until my mother died at 58 of ovarian cancer. I was terrified that would happen to me. Now, I scroll through my Facebook feed reading chemo updates and news of departed friends. I feel like death is hunting me and my senses are working overtime to hear the approach. I don’t want to live in fear – so I’m leaning into death to see if I can change that.

Each morning, I opened my eyes and thought of the day in front of me. I paid attention to the morning light through my window, the luxurious feel of my bed sheets, the realization that I had no pain, and I felt great. My feet hit the floor and I jumped into my day joyously. My mantra became ‘say yes until it breaks you.’ I was sounding like an inspirational poster, with kittens. And yet, I didn’t feel as if I was truly living each day like it was my last.

Too embarrassed to talk to people about what I was up to, I turned to books. Die Wise by Stephen Jenkinson struck a huge nerve.

Stephen has been witnessing death for decades, both as head of a palliative-care unit in Toronto and as a “grief whisperer,” helping the dying and their families navigate death. Stephen has no 10-step plan to a wise death but talking about it with him on Pondercast, my podcast, was such a relief.

When my mother lay sick and dying, I felt frozen and mute, and she was keeping what she felt to herself. Probably because I didn’t ask. I have terrible regret about that. I know I’m not alone in these feelings after a parent dies.

We live in a death-phobic culture. We don’t acknowledge dying people, we keep turning the conversation in the other direction, toward life and “keeping up the fight.” We institutionalize our terminally ill and our aged and we outsource the task of dealing with our dead. Illness and death are kept as far from the living as possible – it’s no wonder we are at a loss to find anyone to talk about it with.

In the same way that women have fought to take back the birth experience – bringing it home, surrounding birth with family and siblings, making it a human experience instead of a medical one – might we do the same thing with death?

I began to question my motives in taking on this three-month death exercise. It became clear that I was anxious to learn how to handle death. I wanted to bring order to the chaos of feelings I had. I thought I could learn to embrace death just enough to think I had it pegged.

My experiment is a pale shadow to the real thing. It doesn’t compare to the anxiety and fear felt by those who are truly ill. Nor what I once felt waiting for a biopsy report.

I can’t embrace death, death will embrace me. It will have its way with me. It will be messy and confusing. Death will ask everything of me. Will I be able to accept that? Is it too much to ask that that I might I leave my life loving it?

Perhaps the strangest outcome of this morbid exercise is realizing I have a moral obligation in my final days. Dying will be my last and perhaps most important act of parenting. I need to show my children how it’s done. That death carries with it a responsibility is helpful to me, it gives my death some purpose.

I have started awkward and halting conversations about death with my father, and have asked him to let me in. I want him to share his coming death with me. It will help me when my time comes.

Keeping death in the forefront of my mind is informing everything I’m doing. It’s a funny liminal place to be – but the balance of it feels right.

Laurie Brown lives in Toronto.

Complete Article HERE!


My mother’s peaceful death


The author’s parents enjoying their retirement in New Zealand, 1991.

By Jane Peterson

My mother’s last words were “It’s not working.” She slurred them before she fell into a deep sleep. Just prior to that, after ingesting medication mixed with applesauce, she had placed a plastic bag over her head and secured it. According to her meticulous research, this would hasten her passing.

Her death had been planned for months, if not years. Both my parents were members of The Voluntary Euthanasia Society in New Zealand, where they had retired from England to be close to my eldest sister and her children. Even though I had married an American and moved to rural Colorado, I was fortunate enough to be able to visit them every year and stay maybe two or three months.

Contemplating end of life

Our end-of-life discussions had been ongoing for many years, and both my parents were determined to die with dignity at a time of their choosing and before any needless and expensive medical procedures. Their wish was to pass away at home, as peacefully and as inexpensively as possible. As a family we agreed, with no hesitation. Now I pray that my sister and I can end our lives, legally, with the help of an enlightened physician, when quality of life is no longer an option.

My parents generally were in good health until my mother was diagnosed with rheumatoid arthritis at 82. This horrible disease was rampant on her side of the family—her beloved sister became ill in her 20s. She suffered mightily, without today’s wonder drugs that can alleviate some of the unpleasant symptoms, and died in her early 50s.

My mother had obtained a supply of Seconal from her doctor in London and had guarded her “stash,” with a mind to her eventual death. Despite the capsules being several years old, Mother did valuable research, including obtaining a prescription for anti-nausea pills, as well as taking six 10-mg Valium, with a glass of wine, before ingesting the lethal dose of Seconal. She had written separate goodbye notes to my father and to my sister and me. This was necessary to exonerate her family members in aiding and abetting her demise.

The final weeks of her life were filled with joy and laughter, and the planning took on a military aspect that my father, a lieutenant colonel in India during World War II, reluctantly took part in. I can honestly say that we had never laughed so much, despite the looming event that was ever present.

My mother’s pain was becoming increasingly unbearable and even sitting up in bed caused her appalling agony. The family doctor (they still made house calls in New Zealand) had given her Prednisone and Methotrexate. However, throughout her life, my mother had been unable to tolerate strong medications and she was terrified that the Prednisone was making her blind. The Methotrexate, on the other hand, messed with her mind. To our horror, a few weeks before, we found her lying outside in the driveway, in the pouring rain at 3 a.m., crying softly for help.

Goodness knows how long she had been there, and thank God I needed to use the bathroom in the middle of the night. When I checked her room and she was not in bed, I alerted my father. She was taken by ambulance to the nearest hospital and she remained there to be stabilized for a week.

Dying with dignity

Trying to keep on an even keel the morning of her death, I heard her speaking with my father who was asking her (again) if this was what she really wanted. I was cleaning up in the kitchen, and I am not ashamed to say that I lost it. I was privileged to have exceptional doctors in America and was prescribed suitable medication to help me through difficult times. This was definitely one of those occasions and I make apologies to no one.

Darling, darling Mother! So adamant that she could leave my sister and me as much money as she was able. She needed relief from her torture and, thanks to a long relationship with her family doctor in England, she was able to obtain it, in her own bed, surrounded by loving family. My sister and I monitored her pulse. It became weaker and weaker, until it was apparent that she had passed. The whole process took less than one hour.

It remains the most spiritual experience of my life, and I was similarly affected when my father died at home, just over a year later. Desolate after my mother’s death, he lost the will to live and had even asked my sister about getting a gun.

He passed away a week after being placed in a morphine-induced coma by his physician, so there was no verbal contact in his last days. Although he did not have to resort to my mother’s method, he succumbed to an illness that had no name since any diagnosis, advice or procedures that might have prolonged his life were adamantly refused. I suspect it was pancreatic cancer that prevailed.

He died around 11 a.m. on September 1, 1996, with me by his side, holding his hand and professing my love.

The right to make our own choices

As before, with my mother’s death, the funeral director who came to the house was incredibly disappointed when my sister and I firmly rejected his top of the line caskets. My parents always said that they wished to be cremated in matchboxes, a standing joke in our family for many years.

I give thanks every day for my parents’ decisions. My friends are coping with family members suffering from Alzheimer’s, dementia and worse. Their loved ones die in hospitals and nursing homes, lives needlessly prolonged. It results in loss of dignity, immeasurable suffering and devastating financial consequences.

I am so encouraged that more states have passed laws enabling physician-assisted dying (end-of-life options). To those of a similar persuasion, I urge you to become members of Compassion and Choices, based in Denver and available at 800-247-7421 or www.CompassionAndChoices.org. This progressive organization endorses Death With Dignity, and was instrumental in the Colorado voters passing the End-of-Life Options Act, now legalizing medical aid in dying. They continue their efforts in all states.

We should all be so fortunate to have the legal right to pass as we wish, and I say no state or federal agencies have any right to dictate how we make personal medical decisions.

Complete Article HERE!


A Better Way for Families to Care for Dying People


Rutgers palliative care expert Judy Barberio gives patients and their families strategies on how to ease the transition to end-of-life care

Although 70 percent of Americans die from chronic disease, most do not make their preferences for end of life care known to their families, leaving loved ones unprepared for their final days. Patients who wish to die at home and who can benefit from palliative or hospice care usually are referred too late – often in the last four weeks of life – to maintain comfort and quality of life and to better prepare for death.

The nation’s aging population is presenting new challenges to terminally ill patients and their loved ones, who must manage chronic pain, disability and questions over when to engage palliative or hospice care, and to health care providers who help them navigate the end stages of life.

To advocate for health care that maximizes quality of life and that minimizes unnecessary suffering in end-of-life care, Rutgers School of Nursing has partnered with Barnabas Health Hospice and the Visiting Nurse Association of Central Jersey Home Care and Hospice to educate nurses, physicians, social workers and other professionals on how to improve the end-of-life experience for patients and their families through the “Hope and Resilience at the End-of-Life” conference in New Brunswick on March 7 and 8.

Judy Barberio, associate clinical professor at Rutgers School of Nursing and one of the conference’s organizers, discusses some of the most pressing issues faced by terminally ill patients and their families.

How can palliative care and hospice improve the quality of life for the terminally ill and their families?

Palliative care assists a person who has been diagnosed with a life-limiting illness who might die within the next one to two years. It provides an additional layer of support and symptom management as the patient continues with disease-modifying treatment and provides bereavement support for families as well as addresses the patient’s physical, psychological, social and spiritual needs. Studies have shown that people who start palliative care early in the advanced stages of their illness can prolong their lives and have a better quality of life.

Hospice, which is engaged when disease-modifying treatment has ceased, is appropriate when the patient will most likely die within six months and the focus turns to making the patient comfortable and maintaining quality of life.

How can family members help a terminally ill person continue to live a full life with a chronic illness?

People don’t stop being who they are just because they are dying. They can still enjoy a full life by focusing on the small things that make a difference: wearing clothes they love, eating favorite foods, listening to music, reading books and spending time with friends and family.

Palliative care can help by supporting the patients’ family and friends, who often are grieving the illness and eventual loss of their loved one. The team can help family members come to terms with their confusing emotions and understand what the patient is going through. They also help with addressing pain and managing distressing symptoms as a patient goes through treatment and physical decline. They assist patients in expressing their decisions as to the kind of treatment they want at the end of life. They even can help patients live their dreams at a time when they need their dreams the most.

Can pain be controlled when you have a terminal illness?

Pain is one of the most frequent and feared symptoms in advanced disease. For many families, the last memory of their loved one may either be that of a “peaceful” and comfortable transition or that of a painful end. Most pain can be relieved or controlled. Effective pain control requires good communication among patients, caregivers and health care providers. Pain control plans are tailored to meet the patient’s particular needs and are adjusted as these needs change.

How can caregivers and family members combat “compassion fatigue?”

Compassion fatigue has been described as the “cost of caring” for others in emotional and physical pain. It is characterized by physical and emotional exhaustion and a pronounced change in the caregiver or family’s ability to feel empathy for the patient and can lead to depression and stress-related illness. Signs of compassion fatigue include feelings of exhaustion, reduced ability to feel sympathy or empathy, anger and irritability, increased use of alcohol or drugs, and impaired ability to make decisions and care for the patient. Once compassion fatigue sets in, a caregiver should receive assistance through a health care provider and counseling. Compassion fatigue counseling should screen for and treat depression and secondary traumatic stress as well as provide an early detection system to prevent relapse.

Self-care is the cornerstone of compassion fatigue prevention. Often family members or caregivers put their needs last and feel guilty taking extra time for themselves to engage in stress-reduction strategies, such as exercising, taking a long bath, sleeping well, meditating, doing yoga or getting a massage. It’s important for caregivers and family members to put their own health and wellness at the top of the priority list while caring for loved ones.

Complete Article HERE!


Black people must command end-of-life care


By Brandi Alexander

As we celebrate Black History Month, one of our goals should be to change the history of African-Americans like my father enduring needless suffering when we die because we don’t prepare for the inevitable end of life.

When my father’s cancer came out of remission in 2010, he declined in a matter of months. I had never had one conversation with him about his end-of-life care goals, preferences and values, so he suffered terribly during his last days. My family spent so much time fighting over what we thought he wanted, when in reality, none of us knew what he really wanted. That experience taught me not only the importance of these discussions, but also how much of a need there is for us to start planning early, before a time of crisis.

Unfortunately, African-Americans are less likely to complete advance directives or have conversations with our families and health care providers about our their end-of-life care goals, preference and values, according to a 2014 report in the American Journal of Preventive Medicine. It is critical that our community begin focusing on advance care planning about the end-of-life care options, including educating ourselves about the value of hospice and palliative care.

The sad truth is that we suffer from higher rates of health care outcome disparities caused by smoking, obesity, hypertension, heart disease and cancer. By not having frequent conversations about end-of-life care options early, to prepare before a health emergency occurs, people of color often opt for aggressive, futile medical treatments that only prolong an agonizing dying process. African Americans are less likely to access comfort care, hospice and palliative care to maximize the quality of remaining life.

In fact, while representing more than 13 percent of our nation’s population, according to U.S. Census data, we account for only 8 percent of hospice users.

Unlike many of the other disparities that impact the community, this is one we actually have some control over. It starts with having a conversation. Unfortunately too many of us are not having discussions. In fact, 20 percent of African-Americans have not talked to anyone about end-of-life care, according to research conducted by the Duke Divinity School and the National Hospice and Palliative Care Organization.

Every individual has a responsibility to lead by example on health care issues, so I challenge you to start having conversations today, with your personal networks and your health care professionals. Complete an advanced directive and identify your power of attorney, the person who will make decisions for you in the case that you can not speak for yourself. The most loving thing you can do is to make your wishes known to your loved ones, it provides peace for all involved.

Tomorrow is not promised, so whether you want every treatment option available or none at all, it’s imperative to make sure it is clear to those who matter to you the most. Start this process by visiting Compassion & Choices website page, compassionandchoices.org/plan-your-care, where one can access state-specific advance directives and find other resources and tools to help, free of charge.

We even offer a diagnosis decoder that generates questions for physicians specific to a particular illness. Educating and utilizing these resources will not only empower you, it will also have a positive and lasting impact on our community as a whole and the way we experience end of life. Remember … talking about death will not kill you … advocate for yourself!

Complete Article HERE!


What should I know about dying with cancer?


From what to ask your doctor to the key considerations around dying at home, award-winning oncologist and author Dr Ranjana Srivastava offers her advice for patients, friends and family on navigating the last days of cancer

For all the world’s teachings on death and dying, the patient who doesn’t lament it for one reason or another is rare. Some people are unprepared to die. Others are worried about those left behind. Some are angry. Many are frightened. Not everyone is hungry for more life, but almost everyone at some point feels apprehensive about letting go. If you or someone you love is struggling with these issues, here are some tips to navigate the future.

Talk to your oncologist
Studies show that, when it comes to prognosis, oncologists and patients often have different interpretations of the information shared. One found that, while oncologists said they had discussed a poor prognosis, many patients felt that they’d not been made aware of it.

Your oncologist should be clear on your prognosis and what that means, but never be afraid to push for more information – it is both appropriate and valuable to ask your oncologist about what to expect. A lack of awareness or understanding of your prognosis could have major implications for acceptance and planning for the end of life.

In terms of details, dividing life expectancy into broad groups of days, weeks, months or years seems helpful for many people. Asking your doctor to describe what decline may look like can also be helpful, as can ­­getting an understanding of how people die from cancer, medically speaking – a question I’ve tackled here. If you are not sure how or what to ask, get help from your family doctor or palliative care nurse, who can help you write out some questions to take to your next appointment.

Talk to each other
While it can be heart-wrenchingly difficult to talk about the finality of dying, patients and relatives say that even one discussion around an incurable situation can be helpful. Acknowledging mortality allows doctors and families to ask the patient, directly, what they want. This kind of honesty can infuse purpose to a time of challenge by allowing the patient to openly express love, regret and desires, and the family to fulfil the patient’s wishes – whether it’s for their final days or after death.

Martin Ledwick, head information nurse at Cancer Research UK, adds that friends and relatives should leave space for their loved one to express what they need at this time:

“Take their lead about how they want you to support and care for them,” he says. “Sometimes they may want the opportunity to talk about deeper feelings, but at other times they may want to feel ‘normal’ and do some of the things they would normally do in your company. It is good to have the opportunity to be able to tell each other how you are feeling and express love, but sometimes it’s useful to be distracted from this.”

Live well before you die well
Being adequately informed about prognosis allows you control over your life. A patient who has had multiple lines of chemotherapy may be offered yet another treatment, but if they have a realistic understanding of its effectiveness, they may choose to stop treatment and focus on “quality of life” – enjoying cherished experiences: spending time with family, enjoying favourite foods or sitting in a favourite environment. Patients who accept the inevitability of death can make every day count, ultimately improving their own experience and leaving their loved ones in a better place.

Of course, as well as fulfilling any desires, many patients and their families feel grateful for some warning – allowing them to arrange finances, child provisions or decide to, for instance, move a wedding, take a holiday, or downsize a house. Key things to consider are your will, which should be written or updated as soon as possible, your finances (including any benefits you or your carers could be eligible for) and your funeral – which you may want to have input into.

Considering where to die
Most patients hope to die at home, but the truth is that with an ageing population, far-flung relatives and busy households unequipped to manage the round-the-clock needs of a dying patient, it may not be possible. Where it exists, inpatient hospice can be a relief. With a more peaceful environment and interventions aimed at comfort care, it can allow loved ones to focus on providing emotional support, with counsellors and social workers also on hand.

Going home works if there is strong community support and at least a few committed people in place. Caregiving is physically and financially demanding, and can be lonely. Many caregivers are surprised to find that visiting services only come by for short stints; the rest of the time they are on their own. Nonetheless, people experience pride and satisfaction in having nursed a loved one in familiar surroundings – there is something deeply meaningful about this kind of service. Wherever someone dies, it is important to avoid guilt and accept that there are many ways of cherishing a loved one.

If you are considering dying at home – or caring for a friend or family member – seek sound advice about the logistics of end-of-life care in a variety of settings; palliative care teams, occupational therapists, physiotherapists and social workers are expert advisers on feasibility.

“Find out what care is available for you by asking your hospital specialist or GP,” says Ledwick. “And make sure they’ve referred you to the community palliative care team, or one linked to your local hospice. Ask them if any equipment can be provided – such as special pressure-relieving mattresses or beds, or a commode if it’s difficult for you to get to the bathroom – and you might want to consider bringing a bed downstairs.”

If you think the situation is tenable, the next thing to do is finalise your support system. “If you can,” Ledwick says, “organise your friends and relatives in advance, perhaps working out a rota of who is available to give help when. And finally, talk to your local hospice to see if a temporary stay from time to time (respite care), to give your carers a break, is an option.”

You’ll also all need to be armed for the final days – managing physical changes, new symptoms and changes to eating and drinking, which your palliative team should help you understand.

Grieve in your own way
On a recent visit, an elderly patient described the aftermath of his wife’s death. “It’s like there is a ‘use by’ date to my grief. One month was OK, two months was getting long. By six months, my children wanted me on antidepressants. They couldn’t understand that after 50 years together, I feel like I have lost a part of my body. The sensation hits me suddenly and I become sad. But I don’t mind it – the sadness feels right.”

This man was not depressed. In fact, he was doing a remarkable job of coping. It’s the modern world that has lost patience with grief. Grief makes people uncomfortable; it prompts self-examination. But there is no one way to grieve, neither is there a time limit. Grief can come in waves and pounce on you at any time or occasion. Give yourself permission to be sad.

Ledwick agrees: “Relatives and friends need to be patient with grief and allow people to do it in their own way. It is natural for loved ones to want to make things OK – they can feel helpless – but it is important not to underestimate the power of listening to someone and to resist the urge to change the subject or try to cheer them up. This makes people feel like no one is listening to them or understanding how hard it is.”

Friends and relatives can be very helpful in recalling a deceased relative with affection, but if the sadness impacts your life and your ability to carry out day-to-day activities, it’s important to get professional help. “If depression persists or becomes a long-term problem, then grief counselling can be helpful,” Ledwick advises. “The local hospice, your GP or the hospital may be able to put you in touch with grief counselling services or contact organisations like Cruse bereavement care.”

It’s important to have someone to talk to, and speaking to a professional to understand your emotions and coping skills can be extremely useful in providing a template for the rest of your life.

Complete Article HERE!


Death with dignity: dying to die


In May of 2016, Judith Dale was diagnosed with incurable Stage IV colorectal cancer that had metastasized to her liver and lungs. Having taken care of her mother when she was dying of cancer and witnessing its ravages, Ms. Dale wanted to die with dignity, something the California legislature permits patients with a terminal illness to do.

California, like several other states, has an End of Life Option Act (EOLOA) which “allows patients who have a terminal disease (with a life expectancy of six months or less) to request a life-ending drug prescription from their doctor.” Ms. Dale sought to avail herself of her rights under California law.

Sadly, she was denied that opportunity.

Ms. Dale would not have chosen her physician and medical center where she was treated unless they agreed to “respect and help facilitate her right to a more peaceful death via aid in dying,” according to the lawsuit filed against the physician and medical center. That lawsuit claims that the medical center and physician committed elder abuse/neglect, misrepresentation/fraud, negligent infliction of emotional distress, and negligence by failing to assist Ms. Dale with her final wish as it promised it would do.

As a result of the defendant’s failure, Ms. Dale’s “final weeks were brutal” and she suffered a “horrific death,” according to the lawsuit. This unfortunate story, which will be resolved in the courts, presents an opportunity for long-term care owners/operators and all healthcare practitioners to learn from it.

If not, they fail to do so at their peril, risking legal liability, among other adverse consequences.

States with End of Life Options Acts

Currently, five states and the District of Columbia have a Death with Dignity Act or End of Life Options Act. Those states are: California, Colorado, Oregon, Washington and Vermont. Montana does not have a statute regarding physician aid in dying, but its supreme court has ruled that state law does not prohibit a physician from honoring the wishes of a competent and terminally ill patient to receive a prescription that will hasten death.

In the states noted above, in order to receive a prescription for a lethal dose of medication, the patient must be at least 18 years old, be a resident of that state and have a terminal illness. Additionally, the patient must make two separate requests from his/her physicians at least 15 days apart.

As a safeguard, in the states that permit physicians to aid in dying, the physician must certify that the patient is medically competent to make that decision. In some states, such as Colorado, the patient must be referred to a consulting physician to confirm the diagnosis of competency.

The Colorado experience

Mount Evans Home Health & Hospice, in Evergreen, Colorado, was one of the Colorado hospices that had to determine its position and develop a policy and procedure after voters in Colorado passed the State’s first End of Life Options Act last year.

“The Mount Evans Home Health Care & Hospice Board of Directors felt it was important to engage in careful and thoughtful dialogue into the many complexities of this important issue,” said Charley Shimanski, President and CEO of Mount Evans. “This included elements such as supporting our clinical staff, weighing the differing board member viewpoints, and considering other support mechanisms available to patients/families.

“At the same time,” he adds, “we feel strongly that regardless of the path a patient chooses, we respect their choice and will provide the same comprehensive compassionate hospice services to all of our patients.”

Intersection of law, medicine, ethics

The issue of physician aid in dying is controversial at best and implicates the intersection of law, medicine and ethics. While the law allows for physician aid in dying in the states noted above, not all professional organizations have embraced or supported this growing movement.

For example, the American College of Physicians notes in its position paper that it “does not support legalization of physician-assisted suicide” in part because it “fundamentally alters the medical profession’s role in society.” Likewise, the Society for Post-Acute and Long-Term Care Medicine/American Medical Directors Association’s (AMDA) official position is that “AMDA opposes any physician involvement in assisted suicide or active euthanasia of any person regardless of age.”

Notably, professional organizations seem to have an evolving position on the issue of physician aid in dying. For example, the American Academy of Hospice & Palliative Medicine takes a position of “studied neutrality on the subject of whether PAD [physician assisted death] should be legally regulated or prohibited.” The Colorado Medical Society also took a “neutral” position when the issue was on the ballot, noting, “Ultimately, Proposition 106 [Colorado’s EOLOA] represents the most personal of decisions that must be left to our patients to determine.”

Mona’s final journey

Last Thanksgiving, I exchanged holiday greetings with Mona, a lifelong and dear friend. Days later, Mona’s sister called to say that Mona had had emergency surgery the day after Thanksgiving and then chose to be in hospice due to a terminal prognosis. I flew to the hospital/hospice facility in Nevada where my dear friend from childhood lay unconscious and slowly dying.

The “terminal morphine drip,” as it is referred to in medical community, kept Mona barely breathing and essentially unconscious for days. In spite of her decision for a hasty and dignified death given her terminal prognosis, she lingered in that unconscious state for days until she gasped her last breath.

As I held her hand, feeling completely helpless, I wondered if this slow ending was what Mona really wanted. Understandably, we may be reluctant to “let go” of loved ones but in the final analysis, each competent adult has the right to choose if he or she wants to die with dignity or soldier on and fight as long as possible.

In Mona’s case, she did not have the luxury of living in a state with an End of Life Options Act. And so it is with most terminally ill patients.


The most salient recommendation for long-term care providers is to have a well-reasoned policy and procedure, consistent with state law. If you are in the majority of states, the policy is straightforward: The law does not currently permit physician aid in dying, although that might change.

Consider how rapidly states began to legalize medical marijuana once that train left the station. For providers who are in states where physician aid in dying is legal, it is essential to have a policy that comports with your mission statement and values while respecting patients’ right. For example, hospice agencies in states with an EOLOA may choose to be “all in” and allow their medical directors and attending physicians to write the final prescription. Or, they may want no part of that process. Many hospices take a position in between the two extremes.

Few, if any decisions are as personal and far-reaching as the decision to end one’s life. Long-term care providers should be aware that it is likely that more state legislatures will enact End-of-Life-Options Acts. Until then, terminally ill patients will rely on the incredibly caring and competent long-term care providers, including hospices, physicians, nurses, and social workers, to ease their final journey.

Complete Article HERE!


‘Bucket lists’ might help with end-of-life discussions


By Randi Belisomo

Sharing your “bucket list” could be easier than discussing end-of-life medical preferences, and it might be just as useful to your physician, researchers suggest.

If you, like many Americans, have a “bucket list,” your doctor would be well-served by learning its contents, according to Stanford University researchers, who say a conversation about these goals might help guide future care.

Their study, published in the Journal of Palliative Medicine, found that 91 percent of participants had a “bucket list,” or a list of things they hope to do before they die.

Researchers say the bucket list conversation is a simple strategy to help patients consider health decisions. In learning these goals, clinicians are better suited to promote informed decision-making when discussing the potential impact of treatment options.

“The number one emotion I see in patients when they are dying is regret,” said study author VJ Periyakoil, director of the Stanford Palliative Care Education and Training Program in California.

Her team’s online survey asked more than 3,000 participants nationwide if they had a bucket list and what was on it, in order of importance. The average participant was about 50 years old.

Travel was the most prevalent desire. More than 78 percent submitted travel-related hopes. Among college-educated women, 84 percent had destinations in mind.

Accomplishing a goal, like finishing a degree and learning to swim, was important to about 78 percent.

Roughly half hoped to achieve milestones, like getting married, celebrating an anniversary and reconnecting with old friends.

Desire to spend quality time with friends and family ranked fourth, followed by hope for financial stability.

Daring activities turned up on 15 percent of lists. Respondents 25 and younger were much more likely to report daring activities, such as skydiving and swimming with sharks.

Participants who said religion or spirituality was important were the most likely to have a bucket list.

“Faith allows you to imagine something that cannot be verified,” Periyakoil explained. “The ability to imagine something is a proxy for a level of hope even in the face of little evidence. Those are the people who have things on their list and hope they can do them.”

The researchers did not have participants share their lists with physicians, nor did they ask physicians for their opinions on the idea of sharing patients’ bucket lists. Furthermore, the survey did not target people living with chronic or terminal disease.

Still, the researchers hope their findings will help shift end-of-life planning away from an over-reliance on documents.

“If we look at advance directives as the savior of our health system, it’s not going to work,” Periyakoil said. “I don’t want to wait for my doctor to tell me it’s time to do my advance directive. I would rather go to the doctor and say what’s on my bucket list.”

Such a discussion is more intimate than the more sterile conversations that sometimes accompany advance directives, said Susan Mathews, a bioethicist, nurse and instructor at Indian River State College in Fort Pierce, Florida.

“Advance directives are about death; a bucket list is about living,” Mathews said. “A bucket list, if prepared with a dose of serious reflection, gets to the heart of our relationship with self and the others for whom we care.”

Patients should still complete advance directives, she said, but with periodically updated companion documents that express goals.

Like advance directives, bucket lists can change.

The changing of a patient’s health status is one concern with the bucket list strategy, according to medical anthropologist Craig Klugman, who teaches classes on death and dying at DePaul University in Chicago. “Being asked about a bucket list could create anxiety that they should have a list and take efforts to fulfill it,” Klugman said.

Periyakoil said, too often, physicians don’t realize what patients want from life. If they ask about these desires, they can avoid the clinical vacuum in which treatment plans are too often made.

“We need patients to understand that it’s their life, have a better understanding of what they want to do, and understand that medical procedures are a pathway they are signing into,” Periyakoil said.

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