What exactly is an end of life doula?
Bristol Phoenix, Friday, October 25, 2024 by Bonnie Evans
In ancient Greece a “doula” was a female servant who supported women through childbirth. In the U.S., the modern birth doula movement took hold in the 1970’s to de-medicalize labor and delivery and support the option of a natural birth back in the home. Phyllis Farley, a supporter of birth doulas, attended an end-of-life conference and began to conceptualize the role of a doula to focus on the other end of the life cycle. She established the Doula Program to Accompany and Comfort in 2001 in conjunction with the New York University Medical Center. It trained volunteers to support seriously ill patients who were dying, and continues to this day. Farley’s idea contributed to the formation of the end-of-life (EOL) doula movement. Read the full article on Eastbayri.com here.
Let’s talk about: Choosing a healthcare proxy
Bristol Phoenix, Tuesday, August 6, 2024 by Bonnie Evans
The Patient Self-Determination Act passed in 1991 mandates that health care organizations receiving federal funds inform all patients of their right to make decisions regarding their medical care and the right to appoint a Health Care Proxy (HCP). The HCP becomes effective when it is determined by a physician that you are no longer able to make decisions regarding your medical treatment. It could be temporary, or permanent, due to an illness or injury that incapacitates a patient.
If the medical condition improves and the individual regains decision-making ability, the HCP would be revoked.
It may seem obvious that you should choose the person closest to you to be your HCP, a spouse/partner, sibling, or best friend. However, there is much to consider when choosing a health care proxy. Read my full article here.
Cardiopulmonary Resuscitation – Facts versus TV fiction
Bristol Phoenix, Tuesday, June 25, 2024 by Bonnie Evans
Cardiopulmonary resuscitation, or CPR, involves pressing down hard on the chest and forcing air into the lungs to maintain blood flow and is a procedure to revive someone if their heart stops beating and they have died. Unlike most other medical procedures that require our consent to be performed, being resuscitated does not.
Unless healthcare providers and emergency responders are aware of a “Do Not Resuscitate” (DNR) order, they are duty bound to attempt resuscitation. Obviously, in the middle of a medical crisis when minutes are crucial, this is not the time to debate the likely success CPR will have on an individual. The default is to start CPR.
Television has contributed to an unrealistic expectation that CPR is (mostly) successful and shows patients surviving and returning to their previous level of functioning. One analysis of several medical dramas on television showed that the majority (67%) of their characters survived CPR and were discharged from the hospital, while the true survival number is closer to 20% (International Journal of Emergency Medicine).
Taken together, the mandate to start CPR along with the public’s tendency to over-estimate its success suggests that we need to have information and honest discussions regarding patient preferences about their code status.
Read my full article here.
Know the difference between delirium and dementia
Bristol Phoenix, Tuesday, April 16, 2024 by Bonnie Evans
What is delirium? Delirium is described as a “neurocognitive disorder,” which means that an individual who develops a delirium has increasing difficulty focusing their attention, becomes disoriented (often to place), and there may be memory problems and difficulty with speech. This disorder develops abruptly over a few hours or days and is related to a variety of medical conditions.
Some individuals may hallucinate and think they see bugs or animals around them or hear voices. Some patients become agitated or restless, and others may appear sleepy and remain quiet. Delirium can develop at any age, but the risk increases as we get older.
Coping with the love and loss of our pets
Bristol Phoenix, Wednesday, March 13, 2024 by Bonnie Evans
Two out of three American households have a cat or a dog, and pet ownership continues to increase. Our pets can also include fish, birds, horses, guinea pigs, rabbits, and more. Companionship is often the primary reason for becoming a pet owner. Tied to that companionship is the sense of unconditional love. Pets do not judge us or hold a grudge. Coming home and opening the door to be greeted by our pets with nothing but sheer joy is priceless. May I add, especially when living with teenagers?
read my full article on Eastbayri.com
When hope and health cross paths
Bristol Phoenix, Tuesday, February 13, 2024 by Bonnie Evans
We have left the holidays behind and look to the New Year with all kinds of hope: hope that we will keep to our resolutions, hope that our loved ones will stay safe and healthy, hope for a winning team, or hope for tomorrow.
Our hopes tend to change over time, depending on our circumstances and life challenges, and they can influence how we cope with those challenges. Especially when dealing with a serious or progressive illness, hope can influence our well-being and how we think, feel and act in response to a potential threat.
Nutrition at the end of Life ~ When food takes a back seat
Bristol Phoenix, Tuesday, November 7, 2023 by Bonnie Evans
Mae was 81 years old when she was diagnosed with advanced lung cancer. Her treatment plan was to start radiation and chemotherapy. Prior to starting treatment, she had lost 10 pounds over 8 weeks, and very few foods were appealing to her. She was encouraged to add protein supplements to her diet and eat frequent small meals.
Her daughter made all her favorite foods, brought her protein drinks and powders, and appetite stimulants were started. Mae would try to eat but felt full after only a few bites. Treatment began and Mae’s weight loss continued, along with fatigue. Her daughter became frustrated, insisting to Mae, “you have to keep eating!”
In fact, Mae could not force herself to eat, and she did not want, nor could she tolerate, any medically administered nutrition and hydration. She was struggling to continue with her treatments.
An intimate look at HOPE in the face of grief
Bristol Phoenix, Wednesday, September 6, 2023 by Bonnie Evans
‘Legacies from the Living Room: A Love-Grief Equation’
By Debra Parker Oliver
Three years after the death of her husband, David Parker Oliver, Debra was able to have enough perspective to write openly about her experience as his caregiver and to share her husband’s lasting legacies of love, hope, and travel. The title of the book reflects that much of the drama and day-to-day life following his diagnosis of cancer occurred in their living room, which became a sacred place for their family.
The book is a testament to the love that David shared with friends and family and the corresponding grief at his loss. As David said, “show me a person who has never grieved, and I will show you a person who has never loved … you can’t have one without the other.” Debra captures her reactions to the many challenges brought on by David’s diagnosis of Stage IV cancer and how his attitude, resilience and sense of hope were contagious.
I was initially introduced to Debra and David Oliver at a Hospice & Palliative Care Conference in New Orleans. They spoke movingly to an audience of several thousand healthcare providers about how he was living with cancer and how Debra was coping by his side as his caregiver.
Instead of ‘stuff,’ consider leaving a legacy project
Bristol Phoenix, Tuesday, July 11, 2023 by Bonnie Evans
Baby boomers were gifted the silver, china, crystal, and linens that their parents saved for and treasured, but now many millennials are minimalists and less interested in family heirlooms. If the items collected by parents and grandparents have less appeal, what does this mean to family history and lasting memories? Gone AND forgotten?
Consider leaving a different kind of legacy for future generations through the sharing of stories and creating personal and meaningful projects.
Thinking outside the box: Eco-friendly burial options.
Some families are choosing ‘green burials’, which are actually a return to the ways things used to be
Bristol Phoenix, Wednesday, May 31, 2023 by Bonnie Evans & Robin Weber
Simply put, eco-friendly burials, also known as “green” burials, refer to burying a body in a biodegradable coffin without embalming or a vault. The Green Burial Council (GBC) describes this as “a way of caring for the dead with minimal environmental impact that aids in the conservation of natural resources, reduction of carbon emissions, protection of worker health, and the restoration and/or preservation of habitat.”
Rethinking ways to adapt the standard process of burial in the U.S. is slowly gathering momentum, and with the current focus on climate change and environmental stewardship, it is likely to continue. How can we best handle our bodies after death that maintains the honor and dignity of the individual who died, as well as Mother Nature?
Religious and cultural traditions play a significant role in our death rituals, and this needs to be appreciated and respected when discussing alternatives that emphasize the environmental implications.
‘Book captures what it feels like to be a caregiver’
Local library hosting new series of programs for caregivers
Bristol Phoenix, Tuesday, March 21, 2023 by Bonnie Evans
Combining their professional expertise with their experience as caregivers, the authors of “The Unexpected Journey of Caring” truly capture what it feels like to be a family caregiver. They describe the transformation into the role of caregiver with the words “when care meets love.”
Every caregiving experience is unique, yet there are common themes and issues outlined with compassion and insight. Most importantly, the authors offer new perspectives and sage advice based on their deep understanding of the challenges as well as the opportunities for growth when caring for someone who needs us.
Over time, caregivers can feel increasingly out of place with family and friends who are still out in the world working or traveling and setting personal goals. The world of a caregiver, by necessity, tends to become more narrow and focused on the needs of their loved one.
‘Death with Dignity’ being considered in Rhode Island
Bristol Phoenix; Friday, February 1, 2023, by Bonnie Evans
“Death with Dignity,” also known as Physician Assisted Death, Physician Assisted Suicide and Medical Aid in Dying, refers to the legal ability of a physician to provide a potentially lethal medication to be self-administered by a terminally ill patient at their request. The first state to legalize Death with Dignity was Oregon in 1997, and currently there are 10 states, plus the District of Columbia, and 12 countries that have passed similar laws.
The Lila Manfield Sapinsley Compassionate Care Act (H-6600 and S-2112) will be reintroduced in Rhode Island in 2023 by Rep. Edith Ajello and is co-sponsored by state Rep. Susan Donovan of Bristol and Portsmouth. Lila Sapinsley was a Rhode Island state senator, and this bill was initially introduced in 2015 shortly after her death, according to her wishes.
Hospice 101: What, why and when to seek help
Bristol Phoenix; Friday, November 25, 2022, by Bonnie Evans
Considering the option of hospice, or even just hearing the word “hospice,” often comes at a stressful and chaotic time, so having a baseline understanding of how hospice works falls under the heading of “good to know.”
The idea for our current day hospice began in London by Dame Cicely Saunders, a physician who identified the need for specialized care for the dying. She witnessed patients with poorly managed symptoms and care that focused on the disease rather than the person and this led her to open St. Christopher’s Hospice in London in 1967.
When she spoke at Yale in 1963 and shared her ideas, Florence Wald, the Dean of the School of Nursing, was so inspired that she resigned her position to help open the first hospice in Brantford, Conn. There are now close to 5,000 hospice agencies in the U.S.
Grief is Personal - Part 2
Bristol Phoenix; Sunday, September 23, 2022, by Bonnie Evans
Last month’s column discussed what grief can look and feel like and the different stages of grief. Adjusting to the death of someone close to us takes time, and the expression “grief work” says it all. To grow around it, and get to the other side of it, is the work.
After the death, the memorial services, and all the unfinished business, the reality of the loss often truly settles in. Life is different now. What to do?
Ignoring grief by staying busy or avoiding painful emotions can delay healing and even lead to physical symptoms. “Sucking it up” is not the answer. There are some basic recommendations, including what NOT to do.
Grief is Personal - Part 1
Bristol Phoenix; Sunday, August 14, 2022, by Bonnie Evans
Although grief is a universal experience, how it impacts each of us is incredibly personal and unique. It has been described as “where love used to be.” It is the response and the impact that losing a loved one has on the family and friends left behind.
Many variables can influence our grief: the relationship with the person who died, how the person died, our coping strategies, cultural background, religious beliefs, previous losses, and the list goes on.
Is there such a thing as “normal” grief? Author and grief counselor David Kessler emphasizes that there is no one way or right way to “do” grief and that there are no rules. With time, we are often told our grief will heal, but how much time? Actually, it is a process with no final outcome and no timeline. It has been estimated by some that it can take at least a year or even longer for grief to lessen and for the individual to reach not normal, but maybe a “new normal.”
It takes a village - caring for the family caregiver
Bristol Phoenix; Wednesday, July 6 2022, by Bonnie Evans
“There are only four kinds of people in the world. Those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.” Rosalynn Carter
If there are more than 53 million family caregivers in the U.S., we all know someone doing this challenging and compassionate work, and they need our support. It is work, requiring physical and emotional effort to keep a loved one safe and assist with the tasks they can no longer accomplish. Caregiving has many rewards and can be an incredibly meaningful experience.
Spending time together, sharing memories and providing personal care can strengthen connections and provide a sense of purpose. It may also offer an opportunity to pay back someone who once cared for us and to demonstrate family responsibility. Often the experience is a mix of positive moments interspersed with times of stress.
Advance directives ~ why one and done doesn’t work
Bristol Phoenix; Thursday, June 9, 2022, by Bonnie Evans
“The end of life deserves as much beauty, care, and respect as the beginning.” – Andrew Murray
Maybe you have completed advance care documents at some point, either a living will, health care proxy or both, but do you remember what they say? Would you write the same thing today?
When completing an advance directive, considering what we might want in future hypothetical medical situations can be a challenge, and our preferences may evolve over time. These are living documents that should be revisited to make sure they continue to reflect our current wishes, especially when there is a change in health status.
What exactly is palliative care, and where does it fit in?
Bristol Phoenix; Wednesday, April 20, 2022, by Bonnie Evans
Palliative care is described simply as “specialized medical care for people living with a serious illness,” but most people do not know what it is, whether to ask for it or what to think if it is offered
When a person is dealing with a life-threatening illness, they become accustomed to the necessary medical focus on lab work, tests, appointments, and treatments. Palliative care brings the focus onto the person living with the disease to improve quality of life, help manage the burden of illness, and provide more holistic care. BJ Miller, a palliative care physician, describes palliative care as “reflective advocacy,” because it starts with what matters most to the patient.
All that matters in the end – Can we talk?
Bristol Phoenix; Wednesday, March 16, 2022, by Bonnie Evans
What if we were more comfortable sharing our thoughts and wishes about what would matter to us towards the end of our lives? What if we were more informed about what to expect if we were seriously ill or dying?
In the U.S., there is a cultural tendency to avoid the messy topics of serious illness, grief, and death. There is recent concern that the global pandemic’s daily media coverage of COVID-19 cases and hospitalizations has increased the public’s anxiety surrounding death. It may also have served as a reminder that things can change quickly and being more prepared could be a gift to our loved ones and reassuring to ourselves. To be human is to be mortal and this should not come as a surprise. However, facing our mortality, a life-limiting illness, or uncomfortable emotions is never a simple task.
Death Doulas Used to Be Rare. The COVID-19 Pandemic Changed That; Jan 26, 2022, by Melissa Chan
On a cold October morning in Lander, Wyo., Liz Lightner makes a few mental notes as she sits by a stranger’s bedside. The man is 79, has lung cancer and is in a deep-sleep coma. He’s wearing a blue scuba-diving shirt that’s worn out and looks as if it’s been loved, washed and rewashed for many years. Besides the company of his cat, the man is alone and moments from dying.
Natural Awakenings, Greater Boston/Rhode Island; Oct 29, 2021, by Ronica O’Hara
Dying Well:
Four Steps to a Good Death
On his deathbed, Apple founder Steve Jobs looked for a long time at his children, his sister and his wife, then moved his gaze to the space behind them. “Oh wow! Oh wow! Oh wow!” he breathed. No one can know for certain what he was experiencing, but his words point to the deep, mysterious potential of our final hours—the awareness of which can transform our life long before its end.
“An awareness of dying, of death, can wake us up to life. It helps us live a life that’s rich and full and meaningful. When we deny the truth of dying, we live less wholeheartedly, less completely,” says Frank Ostaseski, founder of the pioneering San Francisco Zen Hospice Project and author of The Five Invitations: Discovering What Death Can Teach Us About Living Fully.
Natural Awakenings Greater Boston/Rhode Island, November, 2021
The idea of enlisting an End-of-life Doula may seem like a new or progressive idea, but the act of tending to the dying has existed as long as human civilization itself. In many cultures throughout history, "death doulas" have provided comfort and guidance for the dying and for their loved ones. Read here:
C-TAC Shines A Spotlight on The National End of Life Doula Alliance, Nov 11, 2021
The Coalition to Transform Advanced Care (C-TAC) is a non-profit organization based in Washington D.C. with a broad range of membership whose mission is that “all Americans with serious illness, especially the sickest and most vulnerable, receive comprehensive, high-quality, person and family-centered care that is consistent with their goals and values and honors their dignity.” https://www.thectac.org/about/ They have organized a national movement involving many leaders in related fields to promote relevant policy changes, state and community services, family caregiver support, advance care planning, and workforce education and engagement.
In a recent post, C-TAC featured The National End of Life Doula Alliance (NEDA) in their Member Spotlight, stating that it is “the number-one resource for comprehensive, accurate, and up-to-date information about this developing field of practice.” C-TAC Member Spotlight: The National End-of-Life Doula Alliance (NEDA) – C-TAC (thectac.org)
C-TAC describes end-of-life doulas (EOLDs) as “specially trained non-medical support specialists” that “offer a broad range of holistic services that complement and supplement the care provided by medical professionals, hospice care providers, and others – before, during and after death.”
The President of NEDA Angela Shook responded to this endorsement saying that “families who are utilizing EOLDs and healthcare professionals who are referring families to them, will have confidence in the knowledge of those EOLDs who earn the NEDA Proficiency Badge”. https://www.nedalliance.org/
This partnership with C-TAC increases the awareness and credibility of NEDA and the benefit of EOLDs as an important adjunct to high-quality and person-centered care for the seriously ill. C-TAC’s recognition of NEDA is important for those of us practicing in this evolving specialty and who have earned the right to add “NEDA Proficient” to our credentials.