Dr Alastair McAlpine asked some of young patients what gave them joy and meaning – their answers surprised him
Dr Alastair McAlpine asked some of young patients what gave them joy and meaning. Their answers were surprising and positive.
By Alastair McAlpine
[A]s a pediatric palliative care physician, I spend my days working with children who have life-threatening or life-limiting illnesses and their families.
Although many people think of us as the harbingers of death, in reality, doctors like us aim to maximize quality of life, especially when that life is likely to be shortened. We recognize that these children are so much more than just their illness and that they are part of a family. We focus not just on their medical needs but also on their psychosocial and spiritual ones as well.
Last year, as part of my diploma in pediatric palliative care, I was tasked with evaluating the attitudes of my little patients towards life. I asked some of them what gave them joy and meaning. Their answers were surprising and positive.
In fact, they made me completely re-evaluate my relationships with friends and family. I now spend more time with the people I love and I tell them how I feel about them. I have tried to make kindness a priority in my life.
I decided to share some of the children’s responses on Twitter, to provide some perspective to the fractiousness that is so prevalent there. The response was overwhelming, to say the least (my thread has been retweeted nearly 100,000 times).
The kids were not hung up on “stuff”. What mattered were the things that we all intrinsically know are important, but often forget in the hustle and bustle of daily living. The biggest takeaway for me is that the happiest, most meaningful moments were simple ones that did not require vast sums of money or effort to attain, but instead embraced the importance of human connection. It was also surprising how frequently the so-called small things were the ones that turned out to have enormous significance at the end.
Here are the top six lessons that my little patients taught me about life:
1. Spending time with family and pets is incredibly important.
Whether talking, laughing, playing, or just sharing silence, time spent with loved ones and pets was priceless. Towards the end, the only regret many of the kids had was that they didn’t get to spend more time “with mum and dad and my big brother”.
2. Humor and laughter are vital.
Even though they were squarely facing death, these kids derived amusement from the same things that normal children do: silly antics; clumsy adults; slapstick humor. Laughing is so important for many reasons but key among them is that it reduces pain.
Finding levity in the face of overwhelming tragedy can be difficult, and some of the parents dug into unimaginably deep wells of courage to provide mirth when their hearts were breaking. One dad pulled funny faces through his tears. But it always paid off. And whether ill or healthy, children will always be delighted by farting.
3. Good stories told and read by a loved one offer inspiration.
The written word and vivid fantasies told with basic toys enabled children to create alternate realities away from the often sterile hospital environment. They were sources of inspiration to continue fighting, even when the “battle” seemed lost. After all, if Harry Potter could continue to face Voldemort, then they could defeat their own “monsters”.
Stories also allowed the children to construct a meaningful narrative to explain the often incomprehensible diseases they were so bravely facing. Many believe that our ability to create and share stories is what defines us as human beings, and these kids demonstrated that. Stories inspired, captivated and transported them.
4. Swimming in the sea, playing on the sand and eating ice cream (even on a cold day) are simple, memorable pleasures.
Children vividly remembered the simple pleasures that cost little except the effort of being truly present; the moments that may have seemed small at the time were often, upon reflection, priceless.
5. Children as young as four worried about what would happen to their parents.
Many of the kids had made peace with their fates but wanted to protect mum and dad from additional heartache. This role-reversal is surprisingly common and indicates that children are far more attuned to their bodies than we think they are. Death is the elephant in the room. Part of my job is to encourage honesty and to get everyone talking, even when it’s painful.
6. Simple acts of kindness were treasured and remembered until the very end.
Kindness, whether from the classmate who offered a sandwich or a nurse’s smile, was the virtue that made the biggest impact on the children. They loved kind people and remembered acts of kindness until the very end. The last words I heard from one little girl were: “Thank you for holding my hand when I was scared.”
None of these revelations are new or earth-shattering, but when they come from children who are bravely facing death, an extra level of profundity is added, which has prompted many (including myself) to re-evaluate just what is important with the very limited time we have. Now, if you’ll excuse me, I’m off to the beach to eat an ice cream.
[T]he capacity to bear witness and respond empathically to a dying person’s suffering is inherent in end-of-life care. Holistic, relationship-centered, compassionate care is the hallmark of palliative end-of-life care.1 Yet, simultaneously, researchers have found medical training sometimes ill-equipped in preparing clinicians for the range of concerns and emotions expressed by dying patients and their families. Healthcare professionals report lacking skills in psychosocial and spiritual care of dying people, resulting in high levels of moral distress, grief, and burnout.1 Similarly, Tornoe and colleagues found “western society’s fast-paced healthcare environment conditions us to view death as a physiological event and a failure rather than a natural part of the human lifecycle and a second passage of a life.”
Modern medicine with its emphasis on cure frequently discovers itself struggling with an array of challenges in end-of-life care. Studies on the influence of compassionate silence in end-of-life care have indicated that clinicians’ focus solely on “doing” may actually be inappropriate at times and inhibit their ability to effectively address and meet the needs of the person who is terminally ill. A prominent theme was that the “do, fix, and hopefully cure” mandate in modern medicine may not be appropriate at the end of life and, in fact, may need to be balanced with the quality of being present with those who are suffering.1 Being “present” to patients who are nearing death therefore entails that clinicians possess a certain comfort level in terms of “sitting with the silence” and offering the “gift of presence.”
The Landscape of Silences
The research of Back and colleagues outlined 3 types of silences that can manifest between patients and clinicians in the clinical encounter: awkward, invitational, and compassionate. In regard to awkward silences, they write, “silence most often feels like it is dragging on too long when a well-meaning clinician thinks he should be ‘using silence.’ While we recognize that new skills have a learning curve before they can be performed smoothly, we also think that the problem with a directive to stop doing something is unlikely to produce the quality of silence that is actually therapeutic.”
Invitational silences are often intentional and used to evoke certain thoughts or feelings from the patient in an attempt to engender further dialogue and reflection. “The clinician deliberately creates a silence meant to convey empathy, allow a patient time to think or feel, or to invite the patient into the conversation in some way. While we recognize that these silences are tremendously valuable, we also note that these silences are often described as a kind of holding, which has a stage-setting, expectant quality,” explained Back. Invitational silence mentored by mindfulness can be effective in heightening patients’ awareness of the moment and help them observe their feelings and thoughts in noncritical or nonjudgmental ways. Conversely, mindfulness and the clinician’s ability to “quiet the mind” may also help to free one from distractions that might preclude attentiveness to the present moment. The clinician has to shift his or her thought from a narrative mode to one a patient perceives as more empathic or compassionate.
Although minor attention has been given to compassionate silences, researchers recently have taken note and underscored its significance in end-of-life care. Rooted in contemplative practices, compassionate silences encompass a way of being in the world and with the dying that cannot be contrived nor forced by clinicians. “Compassion in contemplative traditions is transmitted through a quality of mind … and is not a tool to be used with a specific set of indications and meanings,” Back explains. In another study conducted with hospice nurses and pertinent to the practice of consoling presence, Tornoe and colleagues found that embracing the silence demanded a mental shift from a focus on doing something for the patient to being with the patient. Compassionate silences, therefore, should never be understood as a means or device in which to create therapeutic relationships. The clinician’s ability to empathize and “join with” the suffering of the dying fosters rapport. Being present in the moment elicits openness in allowing our humanity to speak. Compassion for the other emerges naturally and freely from within. The ability to abide compassionately, amidst silence in end-of-life care and simply be provides depth and soul to the patient-clinician encounter. Clinicians who developed the ability to maintain stable attention and emotional balance, and are naturally comfortable expressing empathy and compassion can spontaneously achieve compassionate silences.
Conclusion
Mindfulness meditation, contemplative practices, and centering prayer are proven to help clinicians cultivate empathy and develop “consoling presence.” Although further research is needed, studies have clearly demonstrated the positive influence of these techniques in promoting a way of being and quality of mind that is crucial to end-of-life care. Whether meditative practices enhance empathic behavior is not known; however, evidence suggests that meditation has a positive effect on factors known to influence empathic mental processes.
[W]hen states accept medical aid-in-dying practices, physicians risk becoming complicit in covering up the failures of their profession — particularly allowing patients to die badly, Ira Byock, MD, palliative care physician and CMO of Torrance, Calif.-based Providence St. Joseph Health’s Institute for Human Caring, argues in a STAT op-ed.
“Americans are rightly outraged by the mistreatment their dying loved ones commonly receive,” Dr. Byock wrote. “People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.”
Here are 5 things to know about the article.
1. Although physicians do not want their patients to die, they must realize there comes a point when more medical treatments do not mean better care for patients. Additionally, patients’ family members and care givers must recognize their complicity in overtreating their loved ones.
2. In addition to causing patients unnecessary suffering during end-of-life-care, overtreating patients contributes to increased rates of moral distress, burnout, depression, addiction and suicide in physicians, Dr. Byock wrote.
3. Dying badly in the U.S. is most evident in university-based referral centers. Only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died despite the American Society of Clinical Oncology’s recommendation for hospice care as a best practice, according to a study published in the Journal of Oncology Practice.
4. A separate study found UCLA patients with cancer regularly received excessive radiation treatments to tumors that had spread to their bones. Out of 54 patients who met criteria for single-dose treatment under appropriate clinical guidelines, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which indicates a taxing treatment regimen.
5. To help keep patients from dying badly, medical leaders can draft public policies to fix longstanding flaws in clinical training, monitor members’ practices for indicators of quality end-of-life care, persuade hospitals to launch strong palliative care programs and work to implement regulatory reform to increase the minimum number of staff members in nursing homes while revoking the licenses of facilities that continually fail to meet residents’ basic needs, Dr. Byock wrote.
Paperwork including a living will and health care power of attorney can convey your treatment preferences if you are ever unable to make medical decisions for yourself.
[A]s a nurse, Kim Von Asten of Dousman, Wis., knows it’s important to document how you want to be cared for at the end of your life, or when you can no longer speak for yourself because of a major illness or accident. She has seen too many families agonizing at a hospital bedside, trying to decide whether a loved one would want to be taken off life support.
But a few years ago, she realized she had multiple copies of her own advance directive “just laying around the house.” During routine visits, her doctor would ask if she had one. “I’d say ‘Well, they’re at home somewhere and I have no idea where I put them. Just give me another copy,’” says Von Asten, 52. “Then I’d fill out that copy, and who knows where I’d end up putting it. I finally thought to myself, if something ever did happen to me, I couldn’t find them, and my family would never be able to find them.”
Like Von Asten, you may think you’ve done your duty by filling out an advance directive listing your preferences for end-of-life care, such as whether you want aggressive treatment or just pain management, and naming a relative or family friend as a health care agent to express your wishes. But that may not be enough. You still need to make sure your paperwork will translate into reality. That means ensuring that your family fully understands your wishes, updating your directive regularly and making the document easily accessible to those who need it.
“People think that ‘Well, because my family knows what I want, I’m covered,’ ” says Judith Schwarz, clinical director of End of Life Choices New York, an advocacy and counseling agency. “But that’s often not the case at all.” If you haven’t created an advance directive or named a health care proxy, or your loved ones can’t find your directive in an emergency, you run a higher risk that your wishes won’t be honored. “Once you get caught up in the treatment train, it’s hard to get off,” Schwarz says. In an emergency room, she says, “the default position is to treat first and ask questions later.”
Sharing Your Wishes
If you don’t already have an advance directive, create one now—and share it widely. An advance directive, which usually refers to a living will and a health care power of attorney, should document your preferences for medical treatment in an accident or at the end of your life, plus name a health care agent to make decisions on your behalf if you’re incapacitated. Find a form for your state in the advanced care planning section of the National Hospice and Palliative Care Organization or at aarp.org/caregiving (type “advance directive forms” in the search field).
When you’ve completed your advance directive, make multiple copies, says Schwarz. Give them to family members and all the providers on your medical team. Keep your copies where they can be easily located. Paramedics often are trained to check a refrigerator door for a do-not-resuscitate order—so if you have one, tape it there. “Your documents are like nuggets of gold to caregivers left wondering, ‘How do I do this well?,’ ” says Paul Malley, president of Aging with Dignity, a nonprofit that advocates for end-of-life planning. “You want to tell as many people as possible that you’ve made your decisions and where your records are kept.”
If you’re a caregiver for someone who is seriously ill or frail, ask a health care provider about a physician order for life sustaining treatment, or POLST, form, in addition to the directive. The POLST form is a medical order created with a health care provider so that medical personnel know someone’s wishes in an emergency situation. Your loved one can specify if he or she wants resuscitation or other life-sustaining treatment, hospitalization, comfort care or something in between. Search for state-specific information.
Make sure your loved ones are clear about your wishes and willing to carry them out. Start by holding a family conversation that includes as many people as possible, including adult grandchildren, says Marian Grant, a palliative care nurse practitioner and senior regulatory adviser with the Coalition to Transform Advanced Care, a Washington, D.C., advocacy group. State your preferences: Do you want to be kept alive on a ventilator? Are you willing to live in a nursing home?
Once you’ve shared your preferences, ask a trusted relative or friend to be your health care agent. Select someone who can handle the task, and discuss it in depth. “The appointment is only as good as the conversation,” Schwarz says. “What you want is someone who will assume the significant responsibility and decide as you would want, rather than as the daughter who doesn’t want her mom to die.”
Next, ensure your documents will be accessible when they’re needed. Despite technological advances, you can’t assume your paperwork will be recorded electronically with your medical records or shared with your doctors. Methods for storing directives vary by state and by hospital system. In many cases, you’ll need to physically present your paperwork. Keep a copy in your wallet or car, or download it on your phone.
You can store your directive electronically at the U.S. Living Will Registry or DocuBank and allow health care providers to access it. Or create and store an advance care plan using MyDirectives, a free online service. You can use it to notify your health care agent, and he or she can accept or decline the responsibility. You can also share a link to your plan with caregivers and relatives. Von Asten decided to use MyDirectives because she could better organize her documents and keep them in one place.
To be sure your wishes are honored, you or your health proxy also will need to be proactive, double-checking with surgeons, nurses and paramedics to be sure they have your directive or other documents in hand through every phase of your treatment. In one instance, a daughter discovered that her father’s advance directive failed to accompany him when he was moved to a different hospital floor, says Malley.
Update your directive regularly, and give a copy to all those who had the prior version. And follow the updating advice of Charles Sabatino, an elder law expert with the American Bar Association, by using the “five Ds”: a new decade of life, death of a family member, divorce, new diagnosis or a medical decline.
[I]n the Halloween season, American culture briefly participates in an ancient tradition of making the world of the dead visible to the living: Children dress as skeletons, teens go to horror movies and adults play the part of ghosts in haunted houses.
But what if the dead played a more active, more participatory role in our daily lives?
It might appear to be a strange question, but as a scholar of late medieval literature and art, I have found compelling evidence from our past that shows how the dead were well-integrated into people’s sense of community.
Ancient practices
In the medieval period, the dead were considered simply another age group. The blessed dead who were consecrated as saints became part of daily ritual life and were expected to intervene to support the community.
A funeral mass, with mourners, from a Book of Hours.
Families offered commemorative prayers to their ancestors, whose names were written in “Books of Hours,” prayer books that guided daily devotion at home. These books included a prayer cycle known as the “Office of the Dead,” which family members could perform to limit the suffering of loved ones after death.
Medieval culture also had its ghosts, which were closely linked with the theological debate concerning purgatory, the space between heaven and hell, where the dead suffered but could be relieved by the prayers of the living. Folk traditions of the dead visiting the living as ghosts were thus explained as souls pleading for the prayerful devotion of the living.
When, how practices changed
The Reformation in Europe radically changed this cultural interface with the dead. In particular, the idea of a purgatory was rejected by Protestant theologians.
While ghosts persisted in folk stories and literature, the dead were pushed from the center of religious life. In England, these changes were intensified in the period after Henry VIII broke with the Catholic Church in the 1530s. Thereafter, the veneration of saints and commemorative prayers associated with purgatory were banned.
The dead were also removed from view in more literal ways: Reformation iconoclasts, who wished to purge churches of any association with Catholic practices, “whitewashed” hundreds of church interiors to cover the bold, colorful murals that decorated the medieval parish churches.
One of the more popular mural subjects that I have studied for many years was the Dance of Death: over 100 mural paintings of the theme, as well as dozens of manuscript illuminations, have been identified in England, Estonia, France, Germany, Italy, Spain and Switzerland.
Bernt Notke, Danse Macabre, Tallinn, Estonia (late 15th century).
A powerful metaphor
Dance of Death murals typically depicted decaying corpses dancing amid representative figures of late medieval society, ranked highest to lowest: a pope, an emperor, a bishop, a king, a cardinal, a knight and down to a beggar, all ambling diffidently toward their mortal end while the corpses frolic with lithe movements and gestures.
The visual alternation between dead and living created a rhythm of animation and stillness, of white and color, of life and death, evocative of fundamental human culture, founded on this interplay between the living and the dead.
When modern viewers see images like the Dance of Death, they might associate them with certain well-known but frequently misunderstood cataclysms of the European Middle Ages, like the terrible plague that swept through England and came to be known as Black Death.
My research on these images, however, reveals a more subtle and nuanced attitude toward death, beginning with the evident beauty of the murals themselves, which endow the theme with color and vitality.
The image of group dance powerfully evokes the grace and fluidity of a community’s cohesion, symbolized by the linking of hands and bodies in a chain that crosses the barrier between life and death. Dance was a powerful metaphor in medieval culture. The Dance of Death may be responding to medieval folk practices, when people came at night to dance in churchyards, and perhaps to the “dancing mania” recorded in the late 14th century, when people danced furiously until they fell to the ground. But images of dance also provoked a viewer to participate in a “virtual” experience of a community. It depicted a society collectively facing up to human mortality.
Mural of the Danse Macabre from the parish church of Kermaria-en-Isquit, France (late 15th century).
A healthy community
In analyzing the murals in their broader social context, I found that for medieval cultures, dying was a “transition,” not a rupture, that moved people from the community of the living to the dead in stages.
It was part of a larger spiritual drama that encompassed the family and the broader community. During the dying process, people gathered in groups to aid in a successful transition by offering supportive prayer.
Scenes of dying, a funeral mass, sewing the shroud, burial and comfort of the widow. In the lower margin, a group of nobles confronts a symbolic figure of death, riding a unicorn.
After death, groups prepared the corpse, sewed its shroud and transported the body to a church and then to a cemetery, where the broader community would participate in the rituals. These activities required a high degree of social cohesion to function properly. They were the metaphorical equivalent of dancing with the dead.
The Dance of Death murals thus depicted not a morbid or sick culture but a healthy community collectively facing their common destiny, even as they faced the challenge to renew by replacing the dead with the living.
Many of the murals are irretrievably lost. However, modern restoration work has managed to recover some of them. Perhaps this conservation work can serve as inspiration to recover an older model of death, dying and grief.
Acknowledging the work of the dead
Constable, bishop, squire and clerk from the Danse Macabre of the Abbey Church of La Chaise-Dieu, France.
In the modern era entire industries have emerged to whisk the dead from view and alter them to look more like the living. Once buried or cremated, the dead play a much smaller role in our social lives.
Could bringing the dead back into a central role in the community offer a healthier perspective on death for contemporary Western cultures?
That process might begin with acknowledging the dead as an ongoing part of our image of community, which is built on the work of the dead who have come before us.
[I]t was a surprise to enter the Abbey of Gethsemani’s church and see a body lying on a bier. Br. Harold was dressed in a white cowl and his face bore no signs of being made up by a mortician. He did not look like he was sleeping. He looked like what he was: dead.
He was not alone. The community had kept vigil with Br. Harold all night, each monk taking turns at the bier, praying the psalms with him one last time, prayers he knew so well from decades of saying the Divine Office.
As the funeral Mass began, Br. Harold’s bier was carried directly in front of the altar. There was no casket and his face was not covered. He simply lay there, a monk among his brother monks, albeit a now silent and unmoving participant in the Eucharistic feast.
After the Mass, his bier was carried out the doors of the church to the cemetery, filled with hundreds of identical white crosses. Here are buried monks from more than 160 years of monastic life at the Abbey. Among them is Thomas Merton, known in the community as Fr. Louis, buried beside Dom James Fox, the abbot with whom he so often clashed.
Along with the monks and members of Br. Harold’s family, I processed to a freshly dug grave. Although I’ve come to know quite a few of the monks of the abbey, I didn’t know Br. Harold. He was already in the infirmary with Alzheimer’s when I moved to Kentucky. I learned, though, that I missed out on a beautiful and simple man who breathed God in deeply, particularly when looking at a flower in bloom.
To allow Br. Harold’s brother monks, family members, and friends to be near the graveside, I found a spot on an outlook near the church that stood above his final resting place. Cistercians dig their graves very deep and they bury their dead without caskets. From my perch I could see that a pillow had been placed in the grave, on which had been placed a flower. There was also a ladder leading into the grave.
After graveside prayers, one of the monks descended the ladder while others lifted Br. Harold from the bier. The sheet he was on had six long straps attached by which he was lowered into the ground. As his brothers lowered Br. Harold down, the monk standing in the grave gingerly held Br. Harold’s head.
There was love and gentleness in the way the monk did this. I was reminded of the care with which my wife and I would put each of our newborn sons into the crib, doing all we could to make sure that his sleep wasn’t disturbed. When Br. Harold reached the bottom of the grave, I could see his brother monk almost tuck him in for his rest. He carefully laid Br. Harold’s head on the pillow, placed a white shroud over his face, and then ascended out of the grave, pulling up the ladder behind him.
From my vantage point I could see Br. Harold at the bottom of the grave, and then, shovel by shovel, being covered in dirt. Truth be told, it was disconcerting to see a human body—not a body in a casket, but simply a body—be buried. But never before had the words Christians recite on Ash Wednesday—remember you are dust—been as real to me as they were at that moment.
More importantly, I had never experienced death as something beautiful before this funeral. What I witnessed was the care and love of a community for one of their brothers, a care that extended to the very depths of the grave.
On Ash Wednesday we are reminded once again of our mortality; some of us need this reminder more than others. However, there’s something about my experience at Br. Harold’s funeral that leads me to contemplate my mortality not as something to be feared, but as an invitation to give more completely of myself to those in my community—to my wife, to my sons, to my students and colleagues, to those in my parish, and to those in my neighborhood and city.
Br. Harold lived a life of prayer and devotion in the context of a community, staking his own existence to the existences of others. In his life, he gave himself to his community. In his illness and death, the monks in the community gave themselves to him. At his funeral I learned that to confront our mortality is to come face to face with the reality of how deeply and truly we need one another.
[J]ohn “Jack” Zito, 96, doesn’t give up easily. When his wife of 73 years was facing her final days last year, Zito put every ounce of energy and effort he could muster into caring for her so that his beloved Noni could die at home.
Noni died in May; she was 95. It was about a year before she died, as her health was rapidly deteriorating, that Lisa Jeansonne began helping Zito. An experienced end-of-life caregiver, Jeansonne’s gentle presence and calm demeanor was the balm Zito sought as he cared for his ailing wife.
Zito’s eyes moistened and he dabbed at them with a handkerchief in a recent interview, remembering his wife and the care Jeansonne lovingly gave her.
“That is why Lisa is here now,” Zito said. “She looks after me. When that time comes, she’ll be here to help me, too.”
Jeansonne would go on to receive specialized training from her employer to become an end-of-life doula — a professional who can provide comfort to a dying person, and support to that person’s family. It’s part of a growing recognition across Wisconsin and nationally that caring for the dying is a skill — for some, a calling — and can be a pillar for family members.
For Zito, Jeansonne’s care for Noni, given name Margaret, helped forge a lasting emotional connection.
Jack Zito, 96, looks at photographs of his children playing with a young Lisa Jeansonne, who now serves as caregiver for Zito and previously took on the role as an end-of-life doula for his wife, Noni, so she could die at home.
A World War II veteran and retired Chicago business owner, Zito has the strong, clear voice of a younger man. He enjoys puttering about the kitchen cooking, verbally sparring with Jeansonne as they duel in Scrabble games and “letting her” drive when the duo completes household errands. Noni’s death has left a chasm in Zito’s heart and Jeansonne’s companionship partially fills the void.
The Zitos literally landed in Door County after summers of sailing the Great Lakes when they retired to their favorite boating site. They immersed themselves in church and community activities in northern Door County from their home nestled in the woods near Sister Bay. Noni avidly painted watercolors of the area’s fabled scenery and wildlife, while Zito happily assumed the housework and cooking duties.
For decades their health was good and the couple relished visits from family and hosting barbecues with friends.
Old age began to catch up with the Zitos in 2016 when Noni was diagnosed with congestive heart failure. Zito said he knew the end was coming, but he was determined to care for Noni so that she could die in their cherished home in the northern Door County woods.
The pressure to care for his dying wife was fatiguing and it was emotionally draining to watch Noni decline, he said. Although Zito insisted to his children, who are scattered across the nation, including in Door County, that he didn’t need help, his family arranged for a part-time caregiver from Advocates In-Home Care in Sturgeon Bay.
Since Zito was adamant he alone could care for his wife, he devised a plan. When the hired caregiver arrived for the first day of work, he was going to be friendly, and explain he had everything well managed.
That plan slowly melted when Jeansonne knocked on Zito’s front door about two years ago. Her handshake was firm and she looked him in the eye while explaining her role to help him.
Lisa Jeansonne, an end-of-life doula and caregiver, waters plants at 96-year-old Jack Zito’s Sister Bay residence on Jan. 24, 2018.
Later that day, a bond began to develop as Jeansonne and Zito sipped coffee at the kitchen table while Noni slept. Lisa said to Jack, “I know you. Your kids are about the same age as me and we used to play together in the summer.” Lisa refreshed his memory with tales of summers boating, swimming and fishing off of the Ephraim marina with his kids.
Zito’s eyes filled with tears as he told the story of that day, but he was also smiling. From the very first day, Zito said, he could see that Jeansonne’s quiet presence and easy manner was exactly the help he and his wife needed.
“That day, I saw how good Lisa was with my Noni, and, why she was practically like family,” Zito said.
New movement to die at home
While Jeansonne was hired as a caregiver, she also assumed a role that she has fulfilled dozens of times during earlier positions with families — giving specialized, attentive care to a family member who was dying.
The care Jeansonne provides isn’t medical. Rather, it focuses on doing whatever is needed to ensure the dying person is comfortable. It’s a holistic approach that offers emotional, spiritual and physical support to clients and families.
Jeansonne and other caregivers at Advocates In-Home Care are trained as end-of-life doulas. It’s part of a new movement to enable the dying to remain in their homes.
Similar to a doula who cares for and supports a woman through her pregnancy, an end-of-life doula supports a patient and the family through the dying process, said Marggie Hatala, a registered nurse and end-of-life doula in Door County.
Hatala also is a certified trainer for Doulagivers End of Life Elder Care Training Program and founded Doula Givers of Door County more than a year ago to offer free seminars about end-of-life care and also the training for certification as an end-of-life doula — or, as it is sometimes known, a “death doula.”
The end-of-life doula is there to listen and develop a relationship with the patient that transcends the illness and may last days, weeks or years depending on the prognosis, Hatala said.
“Dying and death has become institutionalized, that everyone dies in a hospital or nursing home,” Hatala said. “Most people want to die at home and they don’t want to die alone.
“People are awakening to the fact that there is a way to have a good death.”
About 25 percent of the Door County population is 65 years or older, according to the state data from 2015. In the same year, about 12 percent of the state’s population was 65 years or older.
Based on population trends, Wisconsin’s elderly population in the state will grow 72 percent by 2040, according to the Department of Health Services.
“This is happening throughout the United State — as the baby boomers are aging, there is going to be a growing need for in-home care,” Hatala said. “Door County already has a large aging population that wants to grow old in their homes.”
A former hospice nurse, Hatala said she was frustrated by being limited to providing medical care when she saw that patients wanted and benefited from having a person consistently with them as they were dying.
“I felt a true need to remain with a patient and their family without any agenda, simply to be present to them,” Hatala said. She became trained as a doula and later completed the certifications to teach and train others after she moved to Door County about five years ago.
In 2017, Hatala’s first class of caregivers from Advocates In-Home Care, including Jeansonne, became certified through Doulagivers of Door County program. Besides training to provide physical, emotional and spiritual support to the dying and their families, doulas also receive training to support family members following the death.
End-of-life doula care is paid for privately unless there is a portion of the service that is covered through the caregiver services provided to a client. The cost for end-of-life doula care is about $20 an hour.
Death can be frightening for an ailing patient and it also raises anxiety for family uncomfortable with death, said Mary Beth Williams, a hospice nurse and caregiver with Advocates In-Home Care. “Most people do not want to die alone, and they want to die at home where everything is familiar with people that they love.”
Doulas work in tandem with medical professionals and hospice programs to provide care that integrates the emotional, spiritual and physical support clients and families seek. It’s different from being a hospice nurse, Williams said, because while the nurse in hospice care focuses on a patient’s medications, a doula’s role is to provide a patient with comfort.
“As a doula, you’re aware of the pain (a patient has) and the medications they are taking, but a doula finds other ways to provide comfort; for example, if someone is short of breath, a fan on their face or elevating their head might be beneficial,” Williams said.
Hatala also conducts online training classes for people throughout Wisconsin.
The participants in Hatala’s online classes are as diverse as the regions of the state where they live. They include a paralegal from Sheboygan, a retired minister from Manitowoc and a practitioner of alternative pain management therapies from Green Bay.
They shared similar stories of being drawn to doula care after exposure to aiding the dying and finding it was a fulfilling and gratifying experience.
The Sheboygan paralegal, Shannon Shaurette, was exposed to hospice care while her father was dying from cancer seven years ago at a Milwaukee hospice.
“The hospice workers were beyond amazing to my dad, my mom and the rest of our family … and after my father died I thought about volunteering at a hospice, but the timing wasn’t right,” Shaurette said.
A friend from Vermont told Shaurette about the growing movement to die at home with the support of an end-of-life doula. She started the classes because she wanted “to be able to bring the same feeling of comfort, peace and love to others, as the staff at the hospice did for my family,” she said.
Jack Zito, 96, sits at the kitchen table in his Sister Bay home on Jan. 24, 2018, while talking with Lisa Jeansonne, an end-of-life doula and caregiver, who currently helps Zito with chores and visits with him three times a week.
A way to a ‘good death’
For Zito, the care Jeansonne gave his wife made her “almost family.”
Prior to the day Noni died, she had been talking and sharing memories with family who had gathered at the Zito home. When she slipped into a deep sleep May 21, family members stayed at her side, holding her hand throughout the day. Zito was gone for a few minutes to make more coffee in the kitchen. When he came back, Noni had died.
“It was very peaceful,” he said. “People were with her, she was holding her son’s hand and she had a smile on her face.” Zito said he will be “eternally grateful” for the hospice care and Jeansonne’s attention to details that provided Noni and his family additional comfort.
Since Noni’s death, Jeansonne has continued to provide part-time care for Zito.
“I do the cleaning and we do grocery shopping, trips to the library or the hardware store together. We like to play Scrabble and Jack loves to read,” she said. “Jack can pretty much take care of himself, but I’m here for the help he does need.”
When Zito’s time arrives for his final journey, Jeansonne said, she will be there to help him and his family.
“He’s a wonderful man and adored his Noni. It’s a gift I can give him to make him as comfortable as possible,” she said.
Learn more about the end-of-life doula program
To learn more about Doulagivers of Door County, call Marggie Hatala at 920-495-1566 or check the website www.marggiehatala.com
