It is estimated that 6 percent of American women now hire birth doulas for emotional, physical and even spiritual support during labor and delivery. Twenty years ago, when the birth and postpartum doula movement was in its nascent stage, this percentage was certainly much, much lower.
In fact, 20 years ago, the word “doula” itself evoked quizzical looks. Even 10 years ago, following my initial certification with DONA International, friends, family and colleagues would often inquire: “What’s a doula?” Today, the term has become a part of our common lexicon. Most Americans recognize its meaning: A birth doula is a professional trained in comfort measures, listening techniques and providing compassionate care to women as they labor to give birth.
Today, wise and creative cultural pioneers lead a burgeoning movement in applying key elements of the birth doula model to train people to companion each other in death. Given that our experience of death has become so institutionalized and medicalized, applying the doula model of care to death and dying represents a sane and needed grounding in the wisdom of compassion, companioning and proven comfort measures.
As someone who holds space for both birth and death, I’m hopeful that Fersko-Weiss is right. My specialty is in working with bereaved parents who know the pain of miscarriage, stillbirth and/or infant death. I’ve witnessed firsthand that there is much wisdom to be gained by applying the doula approach of caregiving to the concluding threshold points of our earthly existence. Certified hospice and palliative nurse and end-of-life doula Deanna Cochran agrees. Cochran has been mentoring and training death doulas since 2010. She remembers her initial pull to death doula work after working for several years in acute care and oncology. She remembers how it became “overwhelmingly clear” that “so much needless suffering was going on, and I wanted to be a part of changing that.”
When our loved ones are dying, we certainly work diligently to end needless suffering. But much of human suffering is emotional and psychological. Physical pain can be alleviated through medicine, but what of the pain of grief? Just as more and more American women have turned to birth doulas to help buoy their courage and strength as they traverse the landscape of labor and delivery, more and more Americans – should they know death doulas exist – will turn to death doulas to companion them through the wilderness of loss.
So, what to look for when hiring a death doula? Consider these three simple points.
Seek out someone who has experience and training. Seek out a certified death doula, if possible. A growing number of organizations offer quality end-of-life doula training. Inquire if a certified and/or trained doula works in your vicinity. If possible, interview more than one potential candidate to ascertain which doula will be the best match for your situation. Inquire about their training, past experience, philosophy in holding vigil and what specific comfort measures they can bring to both the dying and the bereaved.
Seek online and/or phone support as needed. Trained death doulas may not live in your area, but in the age of Skype and FaceTime, one can still benefit from a virtual companion. While there is much to be said for face-to-face interaction and the healing power of comforting touch, it is better to have quality support than to go without care. If you are the primary caregiver for a dying relative or friend, reaching out to expand your own support network is especially a very good idea.
Read and research about the doula approach to caring for the dying. It’s certainly possible to bring key aspects of doula caregiving into one’s personal experience with family and friends. Knowledge and insight gained can help you strengthen your confidence and expand your skill set as you offer your presence in vigil for the dying.
Each month, I receive emails from individuals interested in finding an end-of-life doula. “Can you help me find a death doula? My grandfather is dying.” Or “My mother is nearing death and I’m alone in caring for her, can you recommend an end-of-life doula who can support us?” Such requests carry the weight of a great deal of sadness. It’s helpful to remember that we don’t have to walk through the valley of bereavement alone. Whether our grieving is extremely complicated or pretty straightforward, it is real. It hurts. And death doulas are here to offer up their compassion and skill. They hold us as we hold our sorrow.
[P]HIL is lying in his hospice bed. There are tubes in his nose, delivering oxygen to his lungs.
He is attached to a monitoring machine, a beloved rug covering his now-frail body.
It is hard for him to lift his head from his pillow. Aged in his 60s, he is dying of cancer.
His life is no longer measured in milestones. Or years lived. Or career achievements. His life is now measured in days.
But his hospital room – inside the 16-bed Mary Potter Hospice in North Adelaide – is not filled with the gloom of impending death, but rather a celebration of life. Because every day, every hour, Phil is still living.
This is palliative care: where life and death swirl around each other in a strange and powerful dance.
But while death has always been a part of the human experience, palliative care – specialist care for the dying – is a relatively new concept.
Palliative care began in the United Kingdom as part of the hospice movement in the 1960s and is now widely used outside of traditional hospices, offered also in hospitals, nursing homes and private houses.
As Palliative Care SA explains of its purpose: “Living well is a daily choice, dying well takes planning”.
Before Phil dies, he has one wish: to walk his daughter, Sophie, down the aisle as she weds the love of her life. Sophie’s wedding is months away, Phil doesn’t have that time.
In steps the Mary Potter Foundation, the fundraising charitable arm of the hospice.
It is the job of the foundation’s executive director, Cathy Murphy, and her team to fulfil wishes, make memories, create calm and fill the hospice with life-affirming experiences. Murphy has been in her role for eight years.
Eight years.
Eight years surrounded by death: that scary unknown that eventually comes looking for us all. But working so close to death, for Murphy, is not scary; instead she describes it as a privilege.
“The human spirit is a wonderful thing and dying people can teach you so much about what’s important,” she says. “We have people from all walks of life in here and the person with nothing and the person with so-called-everything become the same person when they’re lying in a hospice bed and their life is being measured in months, weeks or days … it’s a great reminder that today is today.”
According to the World Health Organisation, palliative care improves the quality of life of patients and their families who are facing life-threatening illness. It combines the prevention and relief of pain with the treatment of other physical, psychosocial and spiritual issues.
In the 4th century, hospices were places of rest for travellers, but in the 19th century, a religious order established hospices for the dying in Ireland and London. The modern hospice concept originated and gained momentum in England after the founding of St Christopher’s Hospice in 1967. It was founded by Dame Cicely Saunders, widely regarded as the founder of the modern hospice movement.
Patient and Family Councillor Sigourney Reschke
That movement today sees hospices like Mary Potter, which was established in 1976, concern themselves with the task of giving the dying the best days of their lives.
Murphy explains: “It’s not about changing the outcome, it’s about changing the experience.”
She says many express a desire to die at home, but for various reasons – for example, complex medical needs, or inadequate support at home – it is not always possible. And that’s when a hospice becomes vital.
Mary Potter Hospice concerns itself not only with the physical wellbeing of patients – and its medical staff work hard to ensure a patient’s pain medication is sufficient – but it offers a range of therapies including music and art therapy. It has a team of volunteers who record and write a patient’s biography. Each room has access to the outdoors. It caters for special pet visits.
It sounds lovely, but we don’t talk about it. In fact, Palliative Care SA is concerned that people do not discuss death and consider palliative care soon enough because of a misconception it is something to be fearful of.
“We completely understand people might imagine that by considering palliative care hope is dashed,” the organisation states. “But the reality is palliative care is about ‘living’ and focuses on providing people with emotional and spiritual support, pain relief and comfort care enabling them and their family to be empowered to make the most of time remaining.”
So, the organisation hopes that Palliative Care Week – which starts tomorrow and runs until May 28 – will provoke discussion about what it is to have a good death.
I n a society that values its youth and celebrates those who defy their age, is a good death something we strive for? Sigourney Reschke is the manager of patient and family counselling at Mary Potter. She says that the hospice works in conjunction with the hundreds of dying patients it sees each year, to bring about a good death, which is different for each person.
“(A good death) might be to be surrounded by people who you love in a comfortable, warm, safe environment, where you have the opportunity to say the things you need to say, to say goodbye … but that’s not the same for everybody,” she says.
“What we try to do is make those wishes come true for whatever that person and their family hopes to achieve in their time with us.”
Murphy explains that the foundation aims to raise more than $1.2 million annually so that it can help give people the good death they deserve. They receive no government funding and rely on donors.
Staff at the Mary Potter Hospice: registered nurse Luke Peeters, Patient and Family Councillor Sigourney Reschke and Executive Director of the Mary Potter Foundation Cathy Murphy.
“Our aim, when a patient comes in, is to give them the best day possible,” she says. “What is the best day when you know your time is quite finite? It could be a drive to the beach to have a cup of coffee because that’s something you’ve always done. It could be a date night in the hospice with someone you love.”
It could be like Phil: walking his daughter down the aisle. In Phil’s case, the hospice and foundation were able to organise a wedding – from the photographer to the flowers to the champagne to the guest list – in four days.
The commitment ceremony was held in the multi-faith chapel and the medical team worked with the father so that he was strong enough to get out of bed and walk his daughter down a makeshift aisle.
Phil isn’t alone. Patient after patient experiences their best day for as long as they can in the hospice environment.
Murphy talks about an 18-year-old girl who spent her final days at the hospice who wanted to go shopping and so the foundation organised for a local dress shop to bring in racks of clothes for her to try on; then there was the younger couple who wanted to celebrate Valentine’s Day in the way they did each year and so the foundation organised the specific pate, crackers, bubbles and flowers that were their Valentine’s Day tradition.
There was the man who was allowed one last visit to his favourite pub for a final round of beer with his friends. The man who had not seen his family for years, who was reunited in his final days.
Reschke says people are often surprised what they find when they visit Mary Potter.
“People don’t expect to come here where it’s light and there’s a lot of laughter and a huge amount of life and people smile,” she says.
“We laugh a lot, we love a lot. It’s sad, but we have a lot of fun, too.”
Across Australia there are 190 palliative medicine specialists, and in South Australia the Mary Potter Hospice is a key public and private provider of palliative care services, that – given the ageing population – will only increase in demand.
But, as a society, we’re not keen on talking about death. Reschke says: “Death is still a taboo subject and one that is hard to talk about and be open about because it’s scary and we don’t know what happens, we don’t know what that looks like or feels like, it’s a topic that is still hard to talk about.”
So, the role of palliative care is to demystify death, to take away the fear of facing it. “We are a resilient race in terms of being able to face what is happening,” Murphy says. “Not everybody can reach acceptance, but the aim here is to help people find peace.”
Palliative care is a very specific branch of medicine that many in the medical profession argue is becoming more important, especially as society debates the merits of voluntary euthanasia. And that’s a fair point: if palliative care works, why do we need a debate about euthanasia?
Former director of palliative care at the Royal Adelaide Hospital, Dr Mary Brooksbank, has written extensively on this very conundrum and muses: “I’ve watched many people die peaceful deaths which could easily have been traumatic and painful, including my father. I can understand why people want to alleviate suffering at the end of life and why they think voluntary euthanasia might be a compassionate way of achieving that. But with good palliative care, no one dying an expected death needs to die in extreme, agonising pain.
“I believe it is inappropriate to be having a debate in our society about euthanasia until every single health professional knows how to relieve pain and address suffering properly.”
Brooksbank argues that while Australia has a specialist stream of very competent palliative care professionals, the workforce can’t meet the needs of the entire population.
“A lot of work is being done to upskill doctors and nurses, and increasingly they are delivering top-quality care.
“The reality is though, particularly with our ageing population, that the whole palliative care sector is desperately under-resourced.”
Dr Charlotte Griffiths has dual training in both medical oncology and palliative care and works between the oncology ward at Calvary Hospital and the Mary Potter Hospice.
“As challenging as it is, it is work that I find rewarding and I feel I am making a difference to people,” she says.
“I’m able to manage people through what can be the most vulnerable and difficult time of their life and trying to make that a little bit easier along with supporting their family.
Dr Charlotte Griffiths at the Mary Potter Hospice
“Every single patient you treat leaves some kind of lasting impression and it teaches you how fragile life is, how important it is to make the best of every day.”
Just like Dr Griffiths, Luke Peeters works between the oncology unit at Calvary and the Mary Potter Hospice.
Aged just 25, the palliative care nurse has a greater appreciation for death than most of his generation’s youth. He sees death almost daily, and it has had a positive effect on him.
“It has taught me that life can be taken away from you in a matter of months,” he says. “A lot of patients tell me: ‘Experience your life, give it a go, because you don’t know unless you try’.
“One patient I remember was young, she was 43, and I told her that I had always wanted to learn another language and she said: ‘Well, hurry up and do it’. So, I’ve started French.”
Following other patient advice, last year, Peeters travelled to Europe – his first overseas trip – and this year, he started playing the piano again after 10 years away from the instrument.
“You can get so focused on: ‘I need to get a degree, I need to get money, I need to buy a house, I need to buy a car’ and you don’t stop to think: ‘What do I actually want from life?’
“Working with people at the end stage of their life and the advice they have given me, I have taken that on board.”
But for all the life that pulsates inside the Mary Potter Hospice, there is no denying that death is there, too.
And the people who work there regularly shed tears with patients’ families and friends and, later, by themselves in the staff coffee room. Peeters says: “I was always told as a nurse, don’t get too attached to your patients because then you can’t do your job properly, but as an oncology and hospice nurse, you look after these patients, generally, for an extended period of time. You know their daughter’s name and how she’s going at university and you get to know all their friends as well. It’s like you’re a part of their community.
“It is hard when they pass.”
Including Phil.
It was a Thursday when Phil watched his daughter, Sophie, wed her husband-to-be in a love-filled commitment ceremony hosted by the Mary Potter Hospice in its on-site multi-faith chapel.
He died three days later.
And while, yes, tears flowed, so too did immense feelings of joy and love. At the end, in his hospice room, kindness and laughter prevailed.
And precious memories were created in the final days of a man’s life. A lovely, fitting death.
[A] fresh look at how Do-Not-Hospitalize (DNH) orders affect the movement of skilled nursing care residents shows those residents with such directives experienced significantly fewer transfers to hospitals or emergency departments (EDs). Report authors said long term and post-acute care providers may see the information as evidence that considering DNH orders in end-of-life care plans could benefit residents and the nursing center in which they live.
“Residents with DNH orders had significantly fewer transfers. This suggests that residents’ end-of-life care decisions were respected and honored,” the authors said. “Efforts should be made to encourage nursing home residents to complete DNH orders to promote integration of the resident’s values and goals in guiding care provision toward the end of life.”
Results of the new study are in the May issue of The Journal of Post-Acute and Long-Term Care Medicine (JAMDA) in an article titled, “Are Hospital/ED Transfers Less Likely Among Nursing Home Residents with Do-Not-Hospitalize Orders?” JAMDA is the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine.
The design of the study saw researchers examine Minimum Data Set 2.0 information from more than 43,000 New York state skilled nursing care residents. Of that number, 61 percent of residents had do-not-resuscitate orders, 12 percent had feeding restrictions, and 6 percent had DNH orders.
“Residents with DNH orders had significantly fewer hospital stays (3.0 percent vs 6.8 percent) and ED visits (2.8 percent vs 3.6 percent) in their last 90 days than those without DNH orders,” the report said. “Dementia residents with DNH orders had significantly fewer hospital stays (2.7 percent vs 6.3 percent) but not ED visits (2.8 percent vs 3.5 percent) than those without DNH orders.”
After adjusting for statistical variables, researchers said the results show that for residents without DNH orders, the odds of being transferred to a hospital was significantly higher than those with DNH orders.
One of the report’s authors, Taeko Nakashima, PhD, visiting assistant professor, State University of New York (SUNY) at Albany and adjunct assistant professor at Rutgers University, stresses that preparing DNH orders requires collaborative efforts and thorough discussion among the residents, health care proxy, and the attending physician about the goals of the resident and the resident’s prognosis and treatment options.
“Ethical end-of-life care in nursing homes must respect the resident’s autonomy and advance directive,” she says.
Linda Norlander is one of six reader columnists for The News Tribune.
By Linda Norlander
We sat at the kitchen table with coffee and the forms. My father-in-law, Wally, had summoned me to help him fill out one of those “living will things.” We talked about what was important to him, now that he was in his 80s.
He was clear. “I’ve had a good life. I’ve never buried a child or a grandchild. When it’s time for me to go, I don’t want one of those young doctors trying to save me.” His main wish for health care at the end of his life was to be pain-free.
However, Wally’s gift to his family was not just the paper we filled out that day. His larger gift was the conversation he had many times with the family about his wishes.
When the time came that he was unable to speak for himself, and the doctors wanted to place a feeding tube to prolong his life, we were all on the same page. As my mother-in-law said, “Wally wouldn’t want that.”
With the support of hospice, he was able to say good-bye to his children and grandchildren and dispense a few words of wisdom. I remember that he advised our son with a chuckle, “You go to college. That’s good. But someday you need to get a job.” He died peacefully with all of us at the bedside.
When I meet people and tell them that I’ve worked in hospice and end-of-life care for many years, they often open up with their own stories. Unfortunately, too many of them do not end with, “I was able to carry out Mom’s wishes.” Instead, they are descriptions of having to make harrowing decisions for a loved one in the moment of crisis. I think about the son whose mother had a major stroke and was in a coma. He was told by the neurosurgeon that they would have to do surgery or she would die. What child wants to say, “No, let Mom die.”
They did the surgery and she died six weeks later, among the tubes and medical apparatus of an intensive care unit. To this day, he second-guesses whether he made the right decision. “Her last weeks of life were horrific.” When I’d asked him if he had ever talked with her about what she might want, he’d shrugged and said, “It never came up.”
We live in an era of incredible medical advances. We can replace kidneys, hearts, knees and hips. We have pacemakers, effective heart medications and all sorts of treatments for failing systems. What we usually don’t have are honest conversations about the treatments and what they might mean for the quality of life. To the son whose mother died in the intensive care unit, no one said, “If your mother survives she will likely be bedridden and comatose for the rest of her life.”
I am a proponent of doing four things regarding end-of-life care. First, sit down at the kitchen table with your family and have an honest conversation about what quality would mean for you if you weren’t able to speak for yourself. Second, name your health care power of attorney — the person who would speak for you — and give them your blessing that you will trust their decisions. Third, fill out an advance directive (the living will.) And fourth, do this now rather than waiting for a health care crisis.
I know, from years of working in the medical system, that in the moment when difficult decisions have to be made, very few doctors will seek out the health care directive document and say, “This is what your loved one wanted.” More likely, they will look at the family members and ask, “What do you want to do?”
In fact, when it came time to make decisions for Wally, we couldn’t find the health care directive. But the family knew what he wanted and we provided a united front regarding his wishes. Two weeks after he died, we finally found the form — in my mother-in-law’s underwear drawer. By then, though, Wally had already given us his gift.
A dialysis center in Paterson, N.J. Illnesses like renal failure often prove terminal, yet their uncertain progression can make it hard for patients and their families to start the conversation about palliative care and hospice.
By Dhruv Khullar
[H]er last conversation should not have been with me.
I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.
I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.
“If we do it, when will I…” she paused. “When will I wake up?”
I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.
“O.K.,” she said. “Do it.”
There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.
For years the medical profession has largely fumbled the question of what we should do when there’s nothing more we can do. A new wave of research sheds light on what patients want at the end of life, and who is — or isn’t — getting it.
Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days. On average, patients make 29 visits to the doctor’s office in their last six months.
In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.
Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.
It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else.
Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.
Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.
We’ve made significant progress in recent years: The availability of palliative care services has increased 150 percent over the past decade, and compared with patients in other developed countries, older Americans with cancer are now the least likely to die in a hospital (22 percent versus up to 51 percent). But not everyone has benefited from the palliative care movement: Large disparities remain by geography, race and type of illness.
Ninety percent of hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do. Patients treated at for-profit and public safety net hospitals (known for taking in those who have no insurance) are much less likely than those in nonprofit hospitals to have access to palliative care.
[O]livia Bareham wants to change people’s perception about death. “I want to break the taboo where we are excited about birth but dread death,” the death midwife said. “What if they were both explosive, incredible events?”
Part of a death midwife’s job is to sit with the dying at the end of their life. “To be able to bear witness to their dying process,” said Bareham. “The midwife is also looking beyond the last breath. We hold the space, not just for dying but for the funeral, burial or cremation rituals and even beyond that, to help the family and friends grieve.”
It’s hard to accept a terminal diagnosis.
“Some people can’t believe they are dying,” Bareham said. “It is unbelievable. It’s unbelievable that we’re even here. Once you play with the idea of the unbelievable-ness of everything, it’s not so unbelievable that you’re dying.”
Bareham believes a funeral or celebration of life service and properly grieving are important parts of the process.
“It’s declaring that the lost loved one counted and mattered and meant something to those left behind,” she said. “If you miss that, it’s sad, but perhaps it’s even more sad for the family and friends who have lost an opportunity to lean into their own mortality.”
Loved ones decorate a simple casket for a home funeral. Wooden caskets are also available. This cardboard one holds up to 200 lbs. weight.
Bareham has this advice for the living and dying: “Build a relationship with death. Befriend death. Be open to every little nuance of what it means to be alive — which includes pain, sorrow and loss — so you’re not thrown off by a catastrophe. Write your healthcare directive and death care directive because you never know when the end will come. And make peace with anyone with whom you have had conflict.”
All passings are different and not everyone gets a terminal diagnosis where they have time to plan their final moments. Having helped more than 200 people in and around Malibu as they die, or arranged their home funeral, Bareham has an idea how she’d like her own death to be.
Learning to lay a body in honor on a Death Midwife course. One of the attendees plays the body here.
“Some people want to be left alone at the moment of death. I wouldn’t mind having people in the room with me, but I wouldn’t want them touching me and close to the bed. Having a dear friend who totally gets me sitting vigil and holding the space is an anchoring that makes the dying feel safe.”
Just as there’s a popular movement toward natural childbirth, Bareham prefers the idea of a natural death. She isn’t saying don’t ever take morphine to help ease any pain, but suggests not taking so much that you aren’t aware of what’s going on. She may not want someone holding her hand or stroking her head at the end, “or telling me it’s OK to go,” she said, but is happy to do that for others, if that’s what they want.
For Bareham, a good death would be where she is aware of what is happening, where she is prepared and feels a sense of completion and fulfillment of the life lived — “so my dying is just another breath. I am ready and excited for what’s next.”
Bareham advises against waiting until you know you’re dying to forgive people who have hurt you or ask forgiveness of those you might have hurt. “It happens so quickly, and then you’re lost and scrambling. Try to stay in a state of consciousness that if death came, if a massive earthquake hit right now, you’d have a level of excitement,” she said.
People from all walks of life complete Bareham’s death midwifery course. “More young people in their 20s are doing it because they feel something is missing in our culture regarding death,” she described. “Some have been volunteering at a hospice, or are social workers. Others are intrigued with the idea that after the last breath, you can keep the body at home for three days and arrange a home funeral. Or they’ve had a horrible experience of death and are looking for healing.”
Bareham, who is fighting fit and looking forward to a long life, doesn’t find her career depressing.
“Death is just another chapter in life’s journey,” she said
[O]nly one in four Americans has written down their end-of-life wishes in case they end up in a hospital bed unable to communicate — despite high-profile cases over the years that have plainly shown the emotionally painful, expensive and sometimes lawsuit-ridden consequences of not making those wishes known in advance.
A group of UC San Diego nurses and doctors is engaged in an effort to increase that ratio, building a wide-reaching campaign that started with just five letters and a question mark.
Operating like a guerrilla marketing group, albeit with the approval of two key hospital bosses, they began posting signs at both UC San Diego hospitals and its seven largest clinics. The signs simply asked: “WGYLM?”
At first, they refused to explain to others what those letters meant.
“We considered that a great victory to hear, that we were irritating people with our message. It totally primed them to be on the lookout for the answer,” said Dr. Kyle Edmonds, a palliative care specialist.
In March, the letters expanded from a five-letter bloc into the question, “What Gives Your Life Meaning?” There were small signs spelling it out and seven chalkboard-size whiteboards with the question written in large letters at the top. A bucket full of Post-It notes and pens was attached to each whiteboard display and very quickly, people wrote and pasted up their responses.
God has figured into many of those messages. There also have been plenty of first names, heart outlines and attempts at humor — including a note that said, “cheese biscuits.”
Some have been quite dark. Politics have been mentioned as well, including President Donald Trump and his proposed border wall.
The next step for the project group, after thousands of notes had built up, was to add the kicker question: “Have you told anybody?”
It’s not enough to answer the question for yourself, said Edmonds and colleague Cassia Yi, a lead nurse at UC San Diego. They want people to tell their loved ones — in writing — what matters most to them, including how they want to be treated upon death or a medical emergency.
The campaign’s organizers hope that getting people to think about the best parts of their lives will provide an easier entry point for end-of-life planning.
The National Hospice and Palliative Care Organization recommends that everyone fill out an advance directive to make their wishes known in writing. Also often called “living wills,” these are witnessed legal documents that confer medical power of attorney to the person you designate if two doctors certify you are unable to make medical decisions.
Each state has its own form, and California’s asks people to specify whether they want a doctor to prolong their life if they have an irreversible condition “that will result in … death within a relatively short time or if they “become unconscious and, to a reasonable degree of medical certainty … not regain consciousness.”
This has been fraught territory, with many high-profile cases in the courts of distraught families wrestling over the decision to remove life support without any knowledge of the patient’s true wishes.
That includes the case of Terri Schiavo, who was left in a persistent vegetative state after a heart attack in 1990 caused severe brain damage. Her parents clashed with her husband, Michael, who asked the court to order her feeding tube removed in 1998 on grounds that she would not have wanted to live in such a state. Because she had no living will, it took years of very public legal wrangling before life support was disconnected on March 18, 2005.
Yi said she and other nurses feel this type of gut-wrenching stress every time a “Code Blue” page sends them scrambling for a patient who needs immediate resuscitation. Most of those patients don’t have wills or other written indications of their wishes in place, even though every patient is asked if they have an advance directive upon admission to the hospital.
“Advanced care planning wasn’t happening until people were coding out. There is nothing advanced about that,” Yi said.
Even before the current awareness campaign, Yi and her colleagues had worked with computer experts to add special categories to UC San Diego’s electronic medical records system that provide a single collection point for this kind of information. Previously, such details could be entered in dozens of different places, depending on the whims of whoever was taking notes at any given moment.
The project team also got the computer programmers to add a shortcut that allows caregivers to quickly access an advance-directive template.
Since the revamped system went live in February 2015, Edmonds said there has been a 469 percent increase in the number of patient charts that include some sort of information about end-of-life care.
But the project was not reaching every patient — or enough of the university’s medical staff.
Yi recalled a trip that some UC San Diego nurses took to the CSU Institute for Palliative Care at Cal State San Marcos. There, they saw “WGYLM?” signs and learned what the acronym meant. At the time, Cal State San Marcos was in the early stages of creating the “What Gives Your Life Meaning?” project.
The nurses thought: Why not adopt that program for UC San Diego as well? They liked that the operation could be rolled out in a provocative way and that it didn’t simply ask people to fill out advanced directives.
“It just makes an introduction in a more positive, intriguing light,” Yi said.
So far, nearly 1,300 employees in the UC San Diego Health system have taken the pledge to prepare their end-of-life documents and talk with their loved ones about these issues.
Sharon Hamill, faculty director of the palliative care institute at Cal State San Marcos, said the “WGYLM?” campaign has been held on that campus for three years in a row and has spread to sister campuses in Fresno and Long Beach.
She said the signature question was created by Helen McNeil, who direct’s the California State University system’s multi-campus palliative care institute, which is also housed on the San Marcos campus.
Hamill also said the message resonates strongly with people of multiple generations, including college students taking care of ailing grandparents or even parents.
“I love it when one of them stops me somewhere and tells me they saw one of the signs and were thinking about it all the way to class,” she added.
For more information about advance directives, go to nhdd.org.
Henry Fersko-Weiss is such a pioneer. Author of “Caring for the Dying: The Doula Approach to a Meaningful Death,” Fersko-Weiss has trained more than 350 death doulas through the International End of Life Doula Association. Fersko-Weiss believes that the end-of-life doula movement will grow faster than the birth doula movement did because the birth doula movement “brought the word doula into American consciousness.”
