‘Death Doulas’ Help Patients With Cancer Face Their End of Life With Courage and Meaning

Dying does not have the be scary, and there are resources available to help patients and their loved ones, explained an expert.

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Better care is needed for patients with late-stage cancer who may be facing the end of their life, and death doulas — also referred to as “soul doulas” or “end-of-life doulas” — may provide a resource that help patients and their family members cope with this difficult stage, according to Lorraine Holtslander.

“A death doula has education and expertise to support persons and families facing serious illnesses, including through death and grief,” Holtslander, a professor at the University of Saskatchewan College of Nursing in Canada, said in an interview with CURE®. “The doula provides support to access needed resources, make the best decisions and planning and preparing ahead for critical illness.”

Death doulas can help “fill the gaps” between the clinical and personal side of care, explained Holtslander, as they aid patients and families in navigating the health care system while also ensuring that important aspects such as their culture, gender and sexuality are honored through the end of their life. They may also offer services such as aromatherapy and music therapy.

“More people are wanting to take control over how they manage life-threatening illnesses, be supported to do their own future planning and move away from a strictly medical approach to death and dying, toward a more natural end of life,” she said.

Holtslander noted that death doulas are just one aspect of often-underutilized end-of-life-care resources that may be available for patients and their families. She mentioned that palliative care is always appropriate for patients with serious illnesses like cancer and ensuring that patients’ wishes are met starts with a conversation.

“It is so important to know what are the values, wishes and beliefs of the person facing serious illness or end of life so that the best decisions will be made,” Holtslander said. “We all face end-of-life at some point. Let’s make it the best experience, filled with courage and meaning, as there are many choices and options to bring comfort to the person and family.”

Options for patients with late-stage cancer may include palliative care, which focuses on symptom management and psychosocial wellbeing and hospice, which is care for the end of life.

“Patients with advanced cancer should access palliative and hospice care sooner, rather than later, in the process, which research shows will increase both the quality and quantity of their days and time,” Holtslander said. “If a patient is wanting to die at home, supports can be in place, such as the palliative care team, hospice resources and information, and doulas to support family caregivers.”

Death doulas not only help the patient through the end of their life, but also support loved ones through the grieving process after the patient with cancer dies. These professionals may be utilized at any time throughout the process, from completing the advanced-care plan up until and after death.

“Death doesn’t need to be scary of painful; it can be a very beautiful, truly spiritual experience,” Holtslander said.

However, more needs to be done for patients with late-stage cancer facing the end of their life, according to Holtslander.

“We can do better for people with advanced cancer, providing them with the best options, individualized plans of care, and more control over what is happening to them,” she concluded.

Complete Article HERE!

A ‘death doula’ explains how to transcend your fear of dying so you can truly live in the present

Death doula, Tree Carr, explains what she’s learned as an end-of-life guide and how to overcome fear of death so you can live a life with no regrets

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Death doula Tree Carr’s insight into peoples’ final days means that she’s more in touch with mortality than most. Supporting people on their final journey may sound like a grim task, but for Tree, this calling has taught her lessons on how to truly live. Lessons which she has shared with woman&home…

Death is the great unknown and the idea of having to face up to our own mortality and how we’ll be remembered after death can feel more than daunting. However, by learning to interact with this inevitable experience with a positive and supportive lens—you can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.

The word alone can evoke terror, superstition, grief, feelings of loss of control, and existential dread. The sobering reality of death is often kept swept under the carpet and considered taboo for most conversational circles. 

In our long timeline of humanity, we’ve sought to cheat it; delay it; bargain with it; or transcend it. Its great and elusive mystery has captivated the mystics and has raised the eternal question that science has yet to answer—does consciousness carry on after the body expires? No matter what your ontological or epistemological worldview on death is, it’s safe to say that most people are scared to death of dying.

What is a death doula?

A death doula is an end-of-life guide who holds compassionate space for a person journeying through the psychological, emotional, spiritual, and practical terrains of death and dying. The word doula is from ancient Greek, meaning, ‘a woman who serves’—although the role is far from being gender-specific.

I felt the calling to become a death doula in my early forties after a lifetime of synchronistic events all revolving around death. From a near-death experience of nearly drowning in the Atlantic Ocean at the age of four, through to many serendipitous moments involving being at the right place at the right time when strangers on the street have been close to death.

“You can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.”
— Tree Carr

What I’ve learned as a death doula

In my work as a death doula, the most challenging aspect that I witness a dying person go through is surprisingly not the biological deterioration of the body (there is plenty of palliative care pain control for that). In fact, it is the emotional or psychological loss of the sense of ‘self ‘ that appears to be the most painful.

From what I’ve personally observed, at the end of life many people experience a long, slow, and winding loss of who they knew themselves to be. They are thrown into the existential dark night of the soul asking the big questions: What am I? Who was I? What was this all for?

As a result, this can propel the dying person into depression, grief, isolation, and anxiety. This is where the role of a death doula can be very helpful, traversing alongside a person as they lean into the fears and trepidation of the big D!

Certainly, overcoming the fear of death it’s not a ‘one shot’ remedy most of the time and can be a gradual unfolding that combines a mixture of practices and experiences.

How I help people overcome fear of dying

Person contemplating life

Surprisingly enough, my death doula work isn’t always for people who are actively dying. I have folks getting in touch who aren’t dying at all, but they have anxiety around death. Perhaps they are coping with the loss of a parent or struck with grief from experiencing the death of another person they knew.

I guide my client’s through navigating death phobia, tackling grief illiteracy, bereavement catharsis, and reframing the narrative around the topic and therefore moving into a peaceful acceptance of death.

Part of the journey can involve meditations on death, closure techniques, and emotional integration through a variety of creative processes—letter writing, drawing, conversation, and more.

Here are some simple practices I encourage my clients to engage in each day to help overcome the uncomfortable feelings around death…

Observe the ‘little endings’

One way you can start to journey into your fear around death is to have a daily practice where you bear witness to the ’little deaths’ all around you every single day.

It’s a form of mindfulness with a central focus on the theme of endings. When you meet a friend for coffee and then you both say goodbye and they walk away and leave. This is a little ending. When you lose your mobile phone. This is a little ending when the sun sets every evening. This is a little ending.

Allow yourself to hold awareness for these little endings and be with any emotions rising up. Begin to surrender to the process of not holding onto the little endings but allowing them to release. 

Engage the art of non-attachment, seeing that the only constant, is change. Regular meditation practice is also a good habit because it will help to stabilize a conscious state of equanimity through experiencing endings.

Watch the cycles of nature

A pathway through a dark foggy wood

Another helpful tip is to sit and be with nature, observe and be mindfully present. Being closer to nature connects a person to the reality of impermanence. Observing the shifting and changing of the seasons. The growth, decay and return to Spring Equinox. This forever cycle of life, death, and rebirth.

Observe yourself falling asleep

Something else that can help out is sleep. The threshold states of sleep are liminal experiences just as death can be. When one becomes comfortable in these altered sleep states it can help ease the fear of death.

Make space in your bedtime routine for observing this. As you fall asleep every night and you hover on the liminal threshold of the hypnagogic state you can practice and surrender to the idea of your own death. Allowing yourself to relax and surrender to sleep from the cusp of fatigue is a surprisingly easy and transformative technique.

Attend a Death Cafe

Death Cafes are safe spaces to gather and meet to talk with other people about all things death and dying over coffee, tea, and cake. Whether you share your own experiences around losing a loved one or a beloved pet. Or maybe you are navigating your own end-of-life journey, Death Cafes are death-positive, compassionate, non-biased, and non-judgemental events.

In the many Death Cafes that I’ve facilitated worldwide, I see the boundaries of culture, gender, age, race, and religion dissolve as we all come together in solidarity over the one thing we all have in common—the fact that we will all one day die.

Living a life in fear of an inevitability that we all share can prompt or worsen difficult emotions, like anxiety, depression, panic attacks, and conditions like sleep anxiety
and insomnia.

However, by embracing the awareness of this inevitable life process, through positive and supportive ways, can not only help us live a more enriching life—but also help us to live one with no regrets.

Complete Article HERE!

A good ending

End-of-life doulas are destigmatizing death to help the dying end their lives well

By Jacqueline Salomé

Piercing through the chaos of chance and unexpected plot twists that we encounter throughout our lives, there is one stark and certain truth: we’re all going to die.

Yet, our death-phobic society has taught us to fear the only thing we know for sure. Even talking about death evokes superstitious reactions, as if speaking the word aloud is a death sentence in itself.

Death has surrounded us during the pandemic, with millions tragically losing their lives to COVID-19 worldwide. Though we hear about death daily, most of us remain detached from the experience. The whole thing is a terrifyingly mysterious taboo.

Death doulas think we can do better.

As part of a burgeoning death-positive movement, end-of-life doulas support people on their journey toward passing away. They fill a key gap in the typical medical dying process by offering a simple, yet radical, kindness that asks people what it means for them to die well, and makes their vision a reality.

Sue Phillips signs her emails quoting author Haruki Murakami: “Death is not the opposite of life but an innate part of life.” It’s a guiding philosophy for many death doulas.

“We just allow people the space to fully experience what they’re going through,” says Phillips, a death doula in Hamilton, Ontario, who found her calling after retirement. “[We are] really just trying to help people not be as afraid.”

By providing non-medical support and companionship from terminal diagnosis to death, end-of-life doulas like Phillips help the dying clear their practical to-do list and inner consciousness so they can cross the threshold with as much ease as possible.

They encourage clients to plan for what they want their deaths to look and feel like. They assist with paperwork, funeral arrangements and celebrations of life, and offer respite relief to primary caregivers. And they normalize conversations on death and grief through death cafés—informal gatherings where people can talk freely about topics related to dying.

For Phillips, the heart of the work is emotional, guiding clients to say what they need to say, forgiving and asking forgiveness before it’s too late.

“That might be something that a family would turn to a [death] doula for,” she says. “That person is going to advocate for you; that person is going to get you the information you need, or that person is going to sit at your side and let you talk about your emotional feelings, what you’re going through.”

Death doulas are self-regulated through the End of Life Doula Association of Canada, where Phillips sits on the board of directors. The Association connects death doulas across the country, overseeing quality assurance, continuing improvement, and providing education and networking opportunities.

Because the field is not officially recognized, death doulas’ services are not covered by provincial or private health care plans and insurance. Though this gives them flexibility to offer personalized care, there can be cost barriers and little awareness of their offerings.

Yet, without death doulas, many people die unsupported, with their goals for a good death unexamined and unfulfilled.

In Phillips’ experience, most people want to die at home surrounded by their loved ones.

“That’s kind of how it goes. They want to die at home, then hospice, then hospital. Long-term care is like the final choice. They don’t really want to go there,” she says.

Although 87 percent of Canadians wish to receive end-of-life care at home, the majority die in hospitals. The situation has worsened during COVID-19, where the proportion of deaths in hard-hit Canadian long-term care homes has been much higher than the international average.

Phillips says most of her clients don’t want to suffer, either, preferring medical assistance in dying if suffering becomes unbearable. But the medical system often defaults to acute care, seeing death as failure and prolonging it against some people’s wishes.

When Chrystal Toop’s beloved Métis grandmother passed, she was buried with tobacco in her coffin. Toop was angry and confused. Because her grandmother was a smoker who died of cancer, Toop felt like she was being buried with a symbolic weapon.

Toop, an Algonquin death doula from the Pikwàkanagàn First Nation in Renfrew County, Ontario, didn’t understand the significance of tobacco at the time. Colonization, systemic racism, and the legacy of the residential school system—of which Toop’s great grandparents were survivors—took many aspects of culture and language away from her family.

“It was around the end of my twenties that I finally started to make the connections of culture and [the tobacco] finally made sense. What they had done was ceremonial, and it was spiritual, and to show her that she had a safe journey back to the sky world.”

Her grandmother’s death had a lasting influence on Toop, encouraging her to bring cultural practices and plant medicines back to Indigenous people through her decolonial death doula work.

As demand for Toop’s services increased staggeringly during the pandemic, she turned to her mentors to co-found the Indigenous Death Doula Collective, serving Hamilton to Thunder Bay, Ontario. To widen their reach, the collective created Indigenous death doula training for youth, which Toop says is the first of its kind in North America.

The wildly successful program intended to reach 20 youth, but has a waitlist of over 200, is informed by Toop’s personal philosophy that death work is life work that begins at birth. “Society is designed to kill us. It’s that genocidal reality of Canada for Indigenous people…. the reality is, we’re always fighting against our own early deaths,” she says.

What makes Toop’s death doula work unique is the fact that it isn’t only about guiding people to die well. Because the average life expectancy of Indigenous people is up to 10 years less than settler Canadians, her approach also relies on harm reduction strategies to fight against early death. “One of the things I say is that we have the right to die of old age,” says Toop. “That’s all we want. We want Indigenous communities to realize that fantastic reality of becoming an old person, because that’s not typical.”

At four years old, Kim Winnicky was choosing a casket and planning her funeral. But she wasn’t dying. Growing up with a funeral director father, she always felt comfortable knowing that death is a natural part of life.

“Holding space for all that is involved in the end of the dying process is really powerful work,” says Winnicky, an end-of-life doula and hospice volunteer in Whitehorse, Yukon. “I just feel called to it.” When Winnicky sits vigil at a person’s bedside as they die, she feels that power viscerally. “Sometimes the feeling is very calm … and sometimes it’s a feeling of fear and clinging,” she says. “My work is to ground into equanimity and steadiness … that seems to help temper those waves and just sort of bring this grounding radiance into the room.”

Winnicky treats the dying with healing touch—a therapy that balances a person’s energetic fields. Clients have reported profound impacts, including Winnicky’s own mother, who said it was more effective than morphine at controlling her pain from chronic obstructive pulmonary disease.

Simple physical touch can be the comfort that someone needs to release into a peaceful death—Winnicky has seen it firsthand. But during the pandemic, with visitor restrictions in medical facilities and care homes, many have died alone without any loving touch at all. “That breaks my heart for everybody in that situation,” she says.

Everyone’s idea of what it means to live and die well is different. But for Jody Roberts, a death doula based in Coquitlam, B.C., there’s one common thread: love.

“At the end of the day, nothing is permanent but love. We have to ask ourselves, did we love well and were we loved? Did we love ourselves and did we love ourselves enough?” says Roberts.

It’s an influential aspect of Roberts’ work, encouraging clients to engage in these deep emotional and spiritual reflections well before they die. One of Roberts’ clients was a lawyer struggling with losing his identity late at the end of his life—an identity tied up with the achievements that he worked so hard for, but that he couldn’t take with him. It seemed to make his transition uneasy.

“It’s why we need to loosen our attachments before the end and stay attached to love. You can take love with you everywhere, but you can’t take people or things,” Roberts says.

With the help of death doulas, she thinks Canadians are realizing that a better death is possible, and that it actually starts by living fully. And for the living, recognizing that grief is a manifestation of loving what you lost can be a powerful way of moving through the hard feelings. “It’s about loving fiercely every day,” she says. “And loving life so you can end well.”

Death is with us every day—it’s a fact of life. And it feels more present than usual, with the pandemic dragging on and an anticipated increase in cancer deaths due to the pause in elective screening procedures.

But, while death is inevitable, having a tumultuous and fearsome dying experience is not. Death doulas know that the final chapter of our lives can be magnificently powerful, if we embrace it.

Complete Article HERE!

What Are Death Doulas?

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When people say someone had “a good death,” they usually mean that someone was comfortable and not in pain. But what if you could help their final days include the things they treasure — like their favorite song playing, who is at their bedside, even the scent of a candle in the room — so they feel at peace.

That’s why some people turn to end-of-life doulas. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.

It’s work that many people don’t want to think about.

“We live in a death-denying culture,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, OR. Doulas can be part of the team that helps prepare people for death by opening up conversations about it, as well as providing comfort and resources. Hospice care teams and other palliative care practitioners also work in these areas.

Doulas and Hospice

Hospice care often involves a team of people, such as a social worker, a chaplain, and a nurse who checks a patient’s vitals, administers medication, and changes bandages. Doulas, on the other hand, have no required medical background and do not perform any clinical or medical tasks. They may read aloud to a patient, clear clutter, or sing with someone.

“Doulas are able to step into those unsupported spaces,” Johnson says. Where a hospice social worker or chaplain may visit once a week, “Doulas have more time and bandwidth. They are available for deep listening during acute windows of need,” says Johnson, who is on the board of the National End-of-Life Doula Alliance (NEDA).

Doulas can assist patients outside of hospice, too. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of the End-of-life Doula Advisory Council of NHPCO (formerly the National Hospice and Palliative Care Organization), recalls a client who was overwhelmed after taking her husband home from the hospital to die. Rush talked to her about palliative care, a social worker, hospice, and getting a hospital bed. “She didn’t have the first clue about any of that. No one in the hospital tells you,” says Rush, who is also a past president of NEDA.

Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn’t have the wherewithal, resources, and contacts to help her.”

Doulas from the group began visiting her friend twice a week. The visits included reiki, art therapy, and conversation with a chaplain. They got her hospice care and talked to her family about what to expect.

No Typical Cases

You may hear end-of-life doulas referred to as a soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice, the cost of a doula is not covered by Medicare.

Private insurers do not reimburse for doulas, either. But some doulas provide volunteer services through a hospice or nonprofit organization.

Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee from $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula is staying overnight, or other service requests.

Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond getting wills and advance directives in order, they encourage the dying to reflect on their life. Are there relationships they want to repair? Something they need to say or do before they are gone? Who do they want to see again before they die?

There is no such thing as a typical case when you’re a doula. “It’s all over the board,” says Rush, a former hospice nurse and midwife, too. It’s not unlike the old tradition of a neighbor, friend, or auntie coming into help, she says.

Doula visits can be daily, weekly, or span several years. They can assist with writing letters, doing laundry, planning a funeral, or creating a legacy. A legacy project might involve captioning photos, scrapbooking, or organizing recipes to pass on to family.

One of Johnson’s patients had an extensive record collection. She helped him write meaningful stories about his life that coincided with each album. She hung up the stories in his room for visitors to read and discuss with him.

Someone to Talk to and Cry With

Sometimes, the family needs practical or emotional support more than the person who’s dying does — especially if that person isn’t conscious or alert.

Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her weather the stress and emotional strain when her dad was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas to their clients since 2010.

“She sat with my dad for as long as 3 hours and held his hand so I could leave the room.” The doula also helped get her mind off “the inevitable” by asking about her childhood with her dad. “She was someone to talk to, to cry to, to let those things off your chest,” Harmon says.

Schauffler says that her friend’s doula dropped everything to be there for her friend’s final hours and kept in touch with her husband afterward. “It made a huge difference,” she says.

Where to Find a Doula

To find an end-of-life doula, inquire at local hospices that may work with doula volunteers. Or start with the state-by-state directory of doulas from the National End-of-life Doula Alliance.

These end-of-life doula training programs can also link you to people who completed their course work:

  • International End of Life Doula Association
  • The International Doulagivers Institute
  • The University of Vermont Larner College of Medicine
  • Lifespan Doula Association

If You Choose a Doula

Ask prospective doulas about their training, experience, and fees, and also about their availability and backup, advises Rush, who also trains doulas as owner of The Dying Year. Plus, see if they offer the services you want. Massage therapy? Meditation? Meal prep?

You may opt to hire an end-of-life doula who has completed training courses and received certification. But there is no license or credential required to practice. “There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds liability or provides monitoring for end-of-life-doulas,” states the website of National End-of-Life Doula Alliance. “There are a growing number of organizations offering certification but it is voluntary.”

Get references and also consider whether they have the experience but not formal credentials. “The person may have a lot of experience and no certification so don’t rule that out,” Rush says.

Complete Article HERE!

Meet the end-of-life angels who prepare terminally ill people for the day they die

Maggie’s counsellors help those with terminal cancer cope with fears, worries and practical issues

Mandie Malcolm was just 26 when she found lump on my breast

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Lisa Punt doesn’t cry at work. She has never cried at work, even though work, for Punt, is counselling people with terminal cancer and the friends and families of people with terminal cancer.

It must be about as difficult and heart-rending as work can be. Most of us would surely feel tearful when helping people face their own death. And not just their death, but all the concomitant details associated with it, big and small. Who will look after the children? What will happen to the house? What will my spouse do without me? And who’ll water the plants?

What is required of Punt, however, is calmness. “I don’t think I’ve ever been tearful within a consultation or within that interaction. And I think the reason for that is that we [the counsellors] bring to that therapeutic relationship an element of empathy, so we can see what they’re feeling, but at the same time we try very much to step outside actually feeling that emotion that they are experiencing.”

It’s a tough job, Punt says, but it is also a meaningful one. “We see the difference we make.”

Sometimes, though, a particular case will hit a counsellor harder than usual. In those cases, Punt tells me, that counsellor can talk about it with their colleagues, unpicking the feeling and carefully managing it. This process ultimately helps them support the patients and families who need their help. “We are there in a professional capacity,” says Punt, “and we are there to deliver formal, psychological, emotional support, which is part of our training.”

Punt, 51, is the centre head and a cancer support specialist at Maggie’s Cambridge. Maggie’s Centres are places where people with cancer – and their friends and families – can come for support and advice. The centres are beautifully built, designed to be an antidote to the strip-lit hurly-burly of a typical hospital. Within them, staff offer services such as yoga classes, financial advice and, most importantly, a friendly ear.

Maggie’s Cambridge, which is where Punt takes my call after delivering a counselling session, is in the grounds of Addenbrooke’s Hospital. The centre is temporarily housed in former accommodation for hospital staff, but Punt and her colleagues are working towards building a permanent home. “It’ll hopefully be very soon,” she says.

Diagnoses of terminal illness, says Punt, affect people very differently. “When someone walks through the door, we’re trying to work out, ‘What are their major concerns?’ When they’re faced with a terminal disease, they may very much have huge levels of anxiety, fear and worry. There are things like finances, or, ‘How is my partner going to manage when I’m not here if I’ve always sorted out the car insurance or the health insurance?’”

First, the warm, down-to-earth Punt helps her visitor work through their fears around death and dying, which must be no mean feat. The visitor might then be in a better position to address their more practical concerns.

People worry about mortgages, credit cards and life insurance. They wonder whether to retire on the grounds of ill-health and take their pension, or go off sick to ensure a death-in-service payout for their next of kin. They are concerned about funeral arrangements. They might be disinclined to write a will, feeling it to be an acceptance of defeat, but if they seek guidance on that they are offered it, often being given time with a solicitor, free of charge. “Once these things are done,” says Punt, “you have more cap-acity for life, even in the face of death.”

It is breadwinners who tend to worry the most about money issues, says Punt. They are more likely than not to be male, but it is the fact that they are the main earner, rather than their gender, that seems to be the strongest determinant of concern about a family’s financial stability.

Men are less ready to be emotionally voluble, says Punt, and are more likely to attend a support group if its stated purpose is something other than just talking. That purpose can be something as mundane as gardening or sharing bacon butties, but its effect can be to encourage conversation that is as valuable to men as it is to women.

Men and women alike wonder about their partner finding someone new, and it’s not uncommon to feel anxious about being replaced. You might call this the “I bet you’ll end up with Barbara” worry. As Punt puts it: “When children are involved, that’s a very emotive situation. Perhaps a mum is dying and there are two young children who are going to be left behind. Who is Dad going to meet and who’s going to be in the shoes of Mum? That can be a real concern.

“But then, on the other hand, there may be someone who actually gives permission to their partner to go out and find somebody and to not be lonely. It’s such an individual thing. I think the beauty of what we’re able to do, and the privilege we have, is that we can sit with somebody, whatever their fears and worries and concerns are about when they have died, and we can work with them.”

Punt tells me about a family she worked with fairly recently (we have changed some details for the sake of their privacy) where a married man with a son and daughter was told he had a year to live. It was his desperate wife who came to Maggie’s first, recalls Punt. “He was totally in denial and just carrying on as normal and she was trying to sort everything out.”

The husband eventually came for counselling, too. Punt and her colleagues then supported the family in starting a range of conversations. There were finances to discuss, plans for the garden and some decorating that the man had wanted to see through. There was their children’s education, at school and at home. “He wanted to show his son how to shave,” Punt says.

Where appropriate, the children were involved in these conversations. They were given time with an art therapist, who helped them articulate their emotions in a gentle setting. They were given the option of sitting with their father till the end, and they took it.

The man died at home, says Punt, surrounded by his family. “I think the last few hours were not desperately comfortable. But I think it was as good as it could be.”


What will happen to my family after I am gone?

Mandie Malcolm, 32

I had just turned 26 when I discovered a lump on my breast. Because a lump can be any of several things, I wasn’t too worried. What a shock I got when the doctor said it was cancer. Worse, it was secondary cancer: it had spread aggressively. I was told soon after the diagnosis that I probably had a couple of years to live.

It was petrifying. My mum was with me when I got the news, but the worst thing was breaking the news to friends and family. We’re very close, and they’re all supportive, but I knew it must be hard for them as well. I was always thinking about dying and leaving them behind. At the same time, there was so much I still wanted to do, like travelling the world.

Mum started using Maggie’s Edinburgh before I did. When I went myself, I was nervous on the way over, but from the moment I walked in they were all so friendly. Thanks to Maggie’s I’ve had loads of one-to-one counselling sessions and group sessions with other people going through the same as me. I go to yoga classes at the centre, and I’ve had loads of help with my finances. There are horrible, complicated forms to fill out in order to get benefits, but the adviser from Maggie’s helped me with the paperwork and took all the pressure off. My family gets a lot of support, too.

The diagnosis was six years ago and I’m still here. I have managed to get through everything I wanted to do, and now I’m just adding things to the list. After chemotherapy, I had hormone treatment, and because it was easier on my body I was able to do things like visiting Australia. I’ve run a marathon and I’ve been writing a column for my local paper, The Falkirk Herald. After my diagnosis, I thought that I’d never get to plan my own wedding, just my funeral, but I got married last year – it was a really special day.

A lot of people say, “I know what you’re going through”, but they don’t really. Through Maggie’s I’ve made a friend, Leslie, who’s in the exact same position as me, and it’s nice to be able to speak to somebody like her. One of the worst things is that you feel out of control of what’s happening to your body, and that time’s ticking away.

My outlook on life has changed hugely. Because I’ve spent so many days in bed and not feeling great, I really appreciate feeling good. I appreciate every day I’m given and I want to be surrounded by nice people, enjoying life rather than putting things off. Just going for a long walk with my dog is something that means a lot to me.

I’ve had a lot of different treatments and am probably starting to run out of them. Things have been better than the doctors thought, but I’m still realistic. Every extra birthday is special.

Complete Article HERE!

Shape-Shifting as an End-of-Life Doula During COVID

— We’re not inclined to sit idly as the world suffers

by Francesca Lynn Arnoldy

A doula is a non-medical care provider who supports people through intense times, such as birth and/or death, complementing any available healthcare services. Humans have assisted other humans through these complex thresholds since, well, always. The doula role during birth was formalized (with training programs offering certificates) in the 1990s. A trained doula’s presence during the end-of-life, however, has been a more recent development over the past decade or so. Although doula services vary somewhat depending on gifts, strengths, and interests, doulas focus mainly on the tasks of planning, preparing, and processing. During COVID-19, being an end-of-life doula has taken on an entirely new meaning.

What Type of Care and Support Do Doulas Provide?

Planning

Planning support can include advance care forms, such as directives and supplemental questionnaires. A doula will not make any medical or legal recommendations regarding specific decisions, though. Instead, we encourage clients to have conversations with their doctor or lawyer, and we offer to brainstorm questions together before those appointments. Doulas promote informed consent. We want to ensure clients have all the information they need to make their best choices in order to live well concerning after-death care. Additionally, details like scheduling appointments and visits as well as organizing meal deliveries and pet walking can be arduous alongside the emotional, exhausting journey at life’s end. Doulas can manage some of the minutiae so loved ones can be more present at the bedside. To aid in the process of releasing one’s earthly grasp, a doula might assist with “death cleaning” and/or bequeathing treasured items.

Preparing

Preparing includes setting up each client’s space and natural network of friends and family members for optimal living and dying (vigil) experiences — with contingency plans, of course. Doulas connect clients to beneficial resources when services fall outside of our role and scope. We research what is available in our local community and have a trusty directory list at the ready. We gently remind clients, “It’s always too early until it’s too late,” in terms of accepting hospice care, checking off bucket list items, or expressing what they hold deeply.

Processing

Doulas are story catchers. We listen with sincerity and kindness. Many clients spend time reminiscing as time grows short. They appreciate invitations to vent and lament to someone who will not attempt to cheer them up or minimize their concerns. They want to reflect on memories, hardships, joys, and patterns of behavior. They might want to capture some of their stories in a more lasting form — legacy projects. Doulas help design customized options that can include audio or video recordings, a memory book with photos, a t-shirt quilt, artwork, or another type of gift that reflects the uniqueness of each particular person.

Pandemic Pressure

COVID-19 has thrust our undeniable mortality into our collective awareness. Like many people, doulas needed to adapt creatively to meet the growing need. In the month leading up to COVID-19 reaching our shores, I was visiting with a family facing loss. I provided respite to the partner while assisting my client with creating keepsakes for their children. We were already facing challenges related to this client’s disease progression, so when safety protocols kept me away, everything changed. I continued my phone calls with the partner, but it was far from ideal. Honestly, I felt helpless and wished I could have done more. Around this same time, many hospices put volunteers on hold to minimize risk, further isolating people.

While we are skilled at “sitting on our hands” when the moment calls for it, such as while sitting vigil peacefully during active dying, doulas are not inclined to sit idly as the world suffers. During lockdowns, some of our work shifted to virtual platforms when circumstances allowed, depending on the cognition and energy level of our clients, their interest in that kind of connection, and Internet bandwidth. Video visits have been a lifeline for many. This led me to wonder, how else could I provide support during this time rife with loneliness?

Along with several colleagues, I helped launch an IRB-approved research project focused on pandemic grief. Our StoryListening Study is inspired by research on storytelling during early bereavement with healthcare surrogates. We are inviting people who endured a loss during the pandemic (caused by COVID-19 or inevitably affected by it), including clinicians, affected staff, friends, or family members to virtually share their grief story with a trained StoryListening Doula. As a StoryListening Doula, I do not direct or reframe the participant’s experience. I invite. I allow. I am an ally, meaning I walk alongside, utilizing silence often and mirroring back what I am hearing to deepen or clarify the exploration judiciously.

I feel honored to bear witness to struggle, stress, and resilience as people integrate a cataclysmic change and/or compounding grief. I am present as people sift through remnants of a broken heart or an overwhelmed psyche to perhaps find glimpses of hope, pride, and even meaning. While these stories are often heavy and emotional, they are equally inspiring and awe inducing. Sharing these tender stories might help illuminate a person’s inner truth and/or sources of strength.

I have been able to rejoin a few clients in person more recently, which is a welcome advancement, yet my face is doubly covered and this undoubtedly affects our ability to communicate. As we dream of the days beyond the pandemic, I anticipate some of these newer practices will persist. We will likely have hybrid options available — virtual for those who prefer it or who cannot easily access in-person care and face-to-face for others. Regardless, doulas will carry on with our work of assisting others as they face the hardest things, morphing as needed with steadfast dedication.

Complete Article HERE!