Gentle Tips on Death and Dying

I have never died, so this entire book is a fool’s advice.

Book Review

On the first page of her new book, Sallie Tisdale writes: “I have never died, so this entire book is a fool’s advice.”  But with her knowledge, experience and kind Buddhist heart she explores many aspects of dying and death easily and softly.  Wanting to be a writer she knew she needed a regular job to support herself and chose Nursing.  Thirty years later she is a Palliative Care nurse and a gifted writer.

How you can get ready

“This book is about preparing for your own death and the death of people close to you.”  Dying people often speak symbolically of traveling, a need to pack, catch trains, get to a new place.  She likens her book to a death travel guide, finding out about it, being comfortable with it, learning what happens next.  It is a book about “how you can get ready.”

She writes clearly about communication with those who are dying: listening is the most important part. 

Advice for Future Corpses

If you are a caregiver, she advises, be a gatekeeper, set boundaries, be authentic, know your limits.   Helpfully, she lists many examples of things best not to say.  She describes what to expect in the last months: handling fatigue, pain, toileting, nausea, loss of appetite, depression.

Advice for Future Corpses

Difficult choices

Tisdale also elaborates on the last weeks and describes common symptoms such as shortness of breath, and slowing of digestion, with the rule: do not force food or fluids, and how hard this can be for families.  Also, “the dying person may not want to talk any more, may not want you near, but he doesn’t want to be alone”  Caregiving becomes a “solitary walk.”  She also describes the crisis that may be created for families and decision makers by technology, including defibrillators and ventilators and other medical interventions, that can make choices at the end of life very difficult. 

Sometimes physicians are not helpful and the family needs to be guided by what the dying person would want if he or she could speak and as specified in their Advance Directive if there is one.

Last Days describes experience at the bedside, whether at home, or in a nursing home or hospital.  It includes a discussion of confusion and agitation, worsening physical and existential pain, and the use of sedation.  She also notes the “death bed phenomena” of spiritual experiences including visions, bright lights, other worlds, and unseen visitors.  She describes clearly what active dying looks like including changes in consciousness, breathing, skin color, organ failure, up to the moment of death and hours after.  Then starts the death care process including all the burial and disposal options that are available today.  She ends with a chapter on grief and then joy.  Her appendix includes preparing a death plan, explanation of advance directives, and organ and tissue donation.  

This book is a very thoughtful and inclusive compendium of knowledge needed to care for a loved one who is dying, presented in a gentle and easy way.  

Assisted Death

Her very last entry concerns assisted death.  In California and several other states, this is legal and referred to as Medical Aid in Dying or MAID.  In our culture we value autonomy and it is almost a mandate that people take responsibility for their own lives.  It follows that we allow people the room to make their own choices about how they die.  It is the mission of End of Life Choices California to assist Californians with terminal or chronic illness by providing education, accurate information and access to all available legal options concerning their end of life wishes.  It is this freedom of choice that we at End of Life Choices California seek to honor and uphold so that everyone can exercise their own choice.

Judy Schnack, a retired AIDS and Hospice nurse, MSN, RN, FNP, is another of our esteemed Client Advocate Volunteers, and one of our first trained, in the summer of 2019.  She has facilitated a grief support group and has also presented Advance Planning seminars  for the City of Encinitas.  She has given presentations on behalf of EOLCCA, has counseled numerous EOLCCA clients, and attended several client planned deaths.  Judy and all our volunteers continue to work remotely during this pandemic in response to the almost daily calls and email requests for information on medical aid in dying and support from terminally ill individuals throughout the state.

Diane Rehm’s new book: When My Time Comes

Editor’s note: We know that focusing on helping our families and supporting our communities in the effort to prevent the spread of the coronavirus is of the utmost importance.  During this time, we will continue to share with you, dear readers, our blogs and other updates about Medical Aid in Dying in California and throughout the country.  We hope that calling your attention to Diane Rehm’s book, reflecting as always her balanced and deeply thoughtful discussion, would help keep you grounded during this unprecedented series of world events.   

Support for Medical Aid in Dying (MAID) is growing as more and more states pass laws to allow those who are dying to choose to end their pain and suffering.  The passage of these laws has sparked debates and conversations across our nation because this topic, like our ongoing arguments about abortion rights or the death penalty, is met with intense controversy and opposition.

Diane Rehm, acclaimed NPR radio host, tackles the conflicts and challenges arising from this law  in her most recent book When My Time Comes: Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End. In her usual even-toned and well-balanced style, Rehm takes a deep dive into the personal stories and opinions that come together to make this law so controversial.

Rehm investigates this subject with knowledge based on personal experience. She understood the value of a person having the right to die way back in 1955, when her own 49-year-old mother endured unimaginable pain and suffering, combined with endless medical procedures, only to prolong the agony and trauma of a death that she knew was inevitable.  In 2016, she watched her husband, John Rehm, suffer and eventually die without being able to receive the medicine he wanted to take to end his life on his own terms. He was ready to die, so he chose to Voluntarily Stop Eating and Drinking (VSED) and died 10 days later, while Rehm sat by his side and watched him suffer.

For this book, and a complimentary upcoming documentary of the same name, Rehm spent two years interviewing patients with terminal illnesses, their doctors, nurses, ethicists, family members and loved ones left behind.  What she discovered is that the patients she interviewed were grateful, empowered, and emphatic in their resolve to die on their own terms, but professors, doctors and experts in the field are divided about the use of Medical Aid in Dying.

Some opponents believe that it is unethical and unnecessary to end a person’s life through MAID. They point to modern medicine and our increased ability to manage pain and ease uncomfortable symptoms through palliative care.  They argue that it is not our role to “play God” and that there is the possibility for error based on a patient suffering from spiritual or emotional distress rather than physical pain. Religious issues, historic racial issues and possible medical malfeasance are all addressed as reasons for opposition to MAID. For many doctors like Dr. Roger Kliger, “There are two ethical goods going against each other. You’ve got the ethic of autonomy going against the ethic of maintaining life.”

Supporters of Medical Aid in Dying cite that it is our right to make the decision for ourselves about when we are ready to die from a terminal illness. What’s clear throughout the book is that people seeking MAID do not want to die, they want to end their suffering and to exercise their rights to live and die on their own terms. With successful access to MAID, people gain a sense of control and report a greater sense of well-being and relaxation knowing that they have this option available if and when they want to use it. As Dr. David Grube, National Medical Director of Compassion & Choices, stated in a lecture to medical students at George Washington University, “Death is not the enemy-we’re all going to die. The enemy is terminal suffering at the very, very end of life… we can’t always manage intolerable suffering. And who defines suffering? It’s the patient who defines suffering, it’s not the doctor.”

 What is a good death?

Throughout her book, Rehm asks both the people who support and those who oppose MAID how they would define “a good death”, and this is an area where we see all of humanity coming together in agreement. We all want to be together with family, to tell people we love them, to be comfortable and pain-free, to ask for forgiveness and to share memories, and to say goodbye. In this regard, we are united.

The message of this book is really an invitation. We need to have these hard conversations. We need to ask our loved ones, “What do you want when you are at the end of your life?”

As these conversations about aid in dying take place in homes as well as in state legislatures, it is Diane Rehm’s hope that more and more people in decision-making roles in our country will see clearly that each and every person has an individual right to determine when it may be the right time for them to die. She also hopes that those individuals will be able to take advantage of such laws that can offer relief, an end to pain and suffering, and a sense of peace for them and their loved ones.

In addition to being a thoughtful contributor to our blogs, Diane Button serves as a Client Advocate Volunteer for End of Life Choices California in the Bay area. She and other volunteers are also available to speak to community groups interested in learning more about the California End of Life Option Act, writing an Advance Health Directive, or finding ways to begin such conversations with their health care providers and loved ones.  Please go to our website to find more information or to request a speaker.

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit our website www.endoflifechoicesca.org for more information. To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

Please contribute now to support our work. Thank you!

That Good Night: Life and Medicine in the Eleventh Hour

 

In the last several years, there have been many wonderful books about how we navigate dying.  This interest coincides with a movement toward questioning the current use of technology up against an individual’s desire to have some control at the end of life.  We are needing to slow down and listen to what people want. We are needing to rethink the idea that everyone wants everything modern medicine has to offer. This new territory is Palliative Medicine, a medical specialty at the intersection of medical interventions and end of life care

What is palliative care?

What is palliative care?  As defined by the Center to Advance Palliative Care, it is specialized medical care for people with serious illness, focused on providing relief from the symptoms and stress of a serious illness.  The goal is to improve quality of life for both the patient and the family. It is appropriate at any age and at any stage in a serious illness. It is an important and evolving concept but still is not routinely available or routinely offered to patients.  

That Good Night: Life and Medicine in the Eleventh Hour describes how we step into this intersection gracefully.  The author, Dr. Sunita Puri, is an assistant professor of clinical medicine at the University of Southern California and the medical director of palliative medicine at Keck Hospital and the Norris Comprehensive Cancer Center in Los Angeles.  This book is the story of Dr. Puri’s journey to palliative medicine; she takes us along.   

Often patients have never heard of palliative care….

As a young physician, Dr. Puri struggled to find the right words about end of life conversations and had to learn at the bedside.  We are in the room as she speaks to patients. “You are forced to a place of extreme intimacy, talking to them about the lives they have led up to this point, their fears and regrets, the people they love, the ways they have made sense of loss earlier in their lives, and how they are making sense of loss now.  You remind yourself to listen carefully and to choose your words carefully.”  Often patients have never heard of palliative care and they consider hospice care as giving up.  They carry loss, grief, anger, fear, sadness, regret. These strong emotions can make us want to leave the room.  “It isn’t your job to erase or justify all of their suffering, but rather to see it, not ignore it.  To ease it when you can. And to be there as they move through it…”

“Your patients are showing you that dying is still living.”

We travel with Dr. Puri from the hospital to the clinic to home visits.  About home visits she says: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.”  She laments the failures of home care.  Why will the healthcare system pay for last ditch chemotherapy or dialysis for a dying patient but not for one trained caregiver to help them remain comfortable at home?  She witnesses the wisdom and dignity and strength patients exhibit as they make peace with life as part of the dying process.  She tells herself: “Your patients are showing you that dying is still living.”

 

She weaves throughout her book stories about her Indian immigrant parents and especially the strong influence of her mother, an anesthesiologist who managed to raise two children in a stable, very spiritual Hindu home in Los Angeles.  As a result, Dr. Puri is not afraid to talk about God and the soul with patients.  She expresses a view of death as a spiritual, sacred passage, not a medical failure. She asks: “What if we regarded death with reverence instead of fear? What if we could learn to appreciate what we have now, in the midst of life, knowing that it is all a temporary gift?  What if doctors realized that they cannot fix everything, but only slow down rather than cure most chronic illnesses? What if doctors learned how to identify and talk about suffering and dignity while still in medical school?  What if they learned how to discuss medicine’s offerings and its limits?”

 

Conversations around palliative care are where we can come to rest between technology and our desire for peaceful death.  When doctors can improve at approaching their patients with vulnerability, honesty, trust and compassion, it will be possible for us to conduct our end of life time, and die as we choose, with dignity, without suffering.  This is the gift that palliative care has to offer.  It brings humanity back into medical care.  Dr. Puri has given us the instruction as well the courage to use our words wisely. Our words and actions around end of life care are at the heart of the revolution that is taking place.

 

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At End of Life Choices California, we have trained volunteers available to provide information and personal support about all end of life options, advance care planning, palliative and hospice care, and California’s End of Life Option Act.  For more information about our services, please browse our website or contact us.

Judith Schnack, MSN, RN, FNP is a Client Advocate Volunteer with End of Life Choices California

 

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

Finish Strong: Book Review

Several months ago, I had the good fortune to hear Barbara Coombs Lee speak about her new book, Finish Strong: Putting Your Priorities First at Life’s End. Barbara, a former nurse, physician assistant, and now an attorney, is the president of Compassion & Choices.  C&C is a national organization whose focus is to empower consumers to chart their own course at life’s end through education and legislation, and helping states to pass medical aid in dying laws.  Having been a nurse myself for more than 50 years, I value her knowledge and expertise; she writes from an informed perspective.

Barbara begins by stating that “the most essential thing a person can do to achieve a gentle departure is simply and bravely to think and talk about it ahead of time.”  She urges us as consumers to ask questions and require candor from our physicians about treatment. We need to speak clearly with our families and/or surrogates about our priorities.  We need to complete appropriate documents including advanced directives and if appropriate, a POLST (Physician’s Order for Life Sustaining Treatment), both of which spell out our wishes for end-of-life care.

Let Me Die Like a Doctor

One chapter that got my attention is called “Let Me Die Like a Doctor.”  What does that mean? She explains that “They agree to fewer invasive or aggressive treatments.  They choose palliative treatments and suffer less. They don’t, themselves, plan to submit to the low-yield and exhaustive gauntlet of tests and interventions that they impose on their dying patients.”  Doctors know that death is inevitable; effort can be directed into remaining healthy and also into preparing to die well. All treatment plans will eventually “fail.” They know when to turn away from futile therapies and focus on love, beauty, faith—whatever is most important to them.  Finally, only the dying person can make these choices.

Make a Video

She goes on to describe the benefits of hospice care and offers considerable direction about handling end-of-life care when facing a diagnosis of dementia.  She states that someone with dementia needs a strong advanced directive, the choice to decline life-sustaining medical treatments, and the ability to decline food and water.  She gives explicit instructions about creating a video to supplement the advanced directive when the person has the mental capacity to make their own choices. The video is a personal message about wishes and choices, having an immediate and authentic tone stronger than any signed and witnessed form.  It is likely to be most useful to the healthcare proxy and to loved ones.

Consumers Can Change the System

Barbara concludes by noting that slowly advancing illness is the most common situation that we will encounter in our own lives.  This “requires adjusting our attitudes and expectations of the healthcare system and turning the system to our own needs. The system cannot change the system.  Only consumers can change the system.” You and me. We need to ask questions, make careful decisions and put our values and priorities first when time is running out.  We and our loved ones will change the system.  We need to reclaim authority over our lives as we age and decline, with an ending that reflects and upholds the values we cherish and the beliefs we hold.  “Let us finish as strong as we’ve lived.”  

I found this to be an excellent read and a great resource for anyone interested in having more than just a passing say over how they wish to die.  This book gives you, the informed consumer, all the information you need to figure out what you want and then put your plans in concrete form in order to actually have those plans actualize.  Thank you, Barbara!

At End of Life Choices California, we are committed to putting much of the information Barbara discusses in her book into the hands of Californians; the terminally ill, their families, and those who are interested in planning ahead. We have trained volunteers available to provide information and personal support about all end of life options, advance care planning, and California’s End of Life Option Act.  For more information about our services, please browse our website or contact us.

Judith Schnack, MSN, RN, FNP is a Client Advocate Volunteer with End of Life Choices California

 

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

This Belongs at the Top of Your Summer Reading List

“A straightforward, well-organized, nondepressing guide to managing the run-up to one’s inevitable demise.”

Amanda Urban, Publisher’s Weekly

 

“The surprising comfort of a new book about death”

Michael Dirda, The Washington Post

No, you won’t survive your death, but you can live until the very last moment without the pain and humiliation that inevitably accompany an over-medicalized dying process.” 

Barbara Ehrenreich, author of Natural Causes

She’s done it again. 

New York Times best-selling author of Knocking on Heaven’s Door, Katy Butler, has penned a stunningly effective and sublimely practical compendium on how to create a good end-of-life. Something few think about, but everyone encounters. 

Ms. Butler offers her readers uncommon insights drawn from her own experience of helping her parents pass peacefully. You’ll discover complex ideas to ponder along with critical steps to follow as you or a loved one contemplate your final approach to the mystery of life. Death. 

She shares inspiring stories. She answers primal questions about weighing medical risks; preparing your family; avoiding a hospital emergency room; building resilience and creativity; tackling essential paperwork and settling your affairs and taking advantage of choices available to you. In California, we can turn to the End-Of-Life Option Act to guide our path. And to End-Of-Life Choices of California (EOLCCA) to gain access to vital information and deeply personal support when needed.

Filled with case studies and real-world examples of both good and bad outcomes, The Art of Dying Well delivers excellent resources to navigate our very complex medical system. Pay close attention to “Ways to Prepare” in every chapter, along with her excellent section on “Coping with Dementia.” Here, she even provides us with an outstanding dementia directive letter.

In Chapter 4, Awareness of Mortality, Ms. Butler presents an efficient tool to enable you to face a serious diagnosis with a poor prognosis: “Understanding the Trajectory of Your Illness.” She encourages us to use this pen-and-paper method to improve understanding, command of details, and to reduce our feelings of helplessness. What’s more, a physician is likely to respond well to your finished product because it will be concrete yet editable.

Ever-Growing Movement

Ms. Butler takes a gently adversarial approach to our health care system with justification. She was dragged “through the mill” with her parents’ long and convoluted illnesses. Her deep and wide research on the business of dying puts her in a league of frontline experts in this ever-growing movement of end-of-life choices and dignity in death.

Author and Advocate, Katy Butler

Further, she staunchly advocates for patients and their families to be seen, heard and understood.  

If you do not have a family member or friend to advocate for you, begin by reading and rereading this book. Mark the pages with sticky notes. Jot down questions in the margins. Take it with you to doctor visits. Consider The Art of Dying Well as your surrogate advocate until you can gather your human network.

 

Giving Life Meaning

In the beautiful spirit of Atul Gawande in Being Mortal, Ms. Butler urges us to clarify over and over what’s important to us, what gives our lives meaning, and to live those values daily. Until we can’t. She counsels us to compel the medical community to hear us, to act in our self-interest, not theirs. If not, we’re empowered to find another doctor or request a palliative care consult. 

Finally, I enjoyed the inventive ways Ms. Butler explains to successfully age in place, why picking a younger doctor matters, how to communicate honestly with medical professionals, and how to make your death a sacred rite of passage rather than a medical event.  

The Art of Dying Well belongs at the top of your summer reading list.

 

Article by Lynne Calkins
Edited by Carolyn L. Smith