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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.

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!