The deaths that changed my life

A palliative care specialist reveals what she’s learnt

[W]ith two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments

 
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.

If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.

At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.

So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.

Dennis’ late wife, with her son (Adrienne’s husband) and grandchildren.

Closure is important

The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.

Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.

Adrienne Betteley

Don’t let fear stop you

When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.

I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.

The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.

Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.

Adrienne Betteley couldn’t face visiting her grandmother in a hospice

Trust a professional

My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.

I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.

I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.

Focus on pain relief

While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.

I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.

Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?

She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.

Communication is key

My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.

It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.

Adrienne Betteley’s late father-in-law, Dennis

As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.

Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.

If he had been given an informed choice about treatment, I’m sure things could have been different.

Say goodbye the right way

A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.

Adrienne Betteley’s late mother

A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.

Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.

Complete Article HERE!

Helping Hands Offer Support at the End of Life

A growing network of ‘death doulas’ is gaining popularity while caring for patients and their families.

By Mary Kane

[E]lena Wertheimer still remembers the panic she felt last year after her terminally ill father, Vincent Battista, was released from the hospital to spend his last days at his Wyckoff, N.J., home. She didn’t know how to prepare. She wasn’t sure how to care for him—or herself. “It’s hard to think straight,” she says. “You’re under extreme stress.”

On the advice of friends, Wertheimer sought help from an end-of-life doula, a new type of caregiver for dying patients and their families. Also known as death doulas, they offer support through all the stages of dying, similar to the roles that birth doulas play during pregnancy and delivery. Doulas discuss a dying person’s wishes and concerns, and they create memory books for the family. They organize vigils and coach relatives on the signs of dying. Some run errands, organize paperwork or even plan home funerals.

Wertheimer, 49, was very close to her father, and her doula, Janie Rakow, helped her overcome her fear of watching him die. Rakow encouraged her to sit with him and hold his hand. Rakow gently guided her to his bedside after he passed, and Wertheimer and other family members spent four hours there, crying, laughing and telling stories. Rakow ensured they weren’t interrupted. “It was very, very special,” Wertheimer says. “I saw him finally not suffering. My last vision of him was peaceful. It made all the difference in the world.”

Doulas are gaining in popularity amid a growing effort to improve the end-of-life experience for patients and families, particularly when someone dies at home. Doulas cover “a huge gap” in time and resources that busy hospices can’t always provide, Rakow says. A hospice team advises families on medical care for the dying; doulas guide the dying and their loved ones through the end-of-life process, offering mostly emotional and other nonmedical support.

Finding a Doula

If you’re thinking of using a doula, you may find the search confusing. There are death midwives, mourning doulas, death coaches and more. Some are volunteers; others charge hourly rates of $25 to $100 or offer “Vigil Packages” costing $1,000 and up. There is no regulatory oversight or standard licensing, training or certification. “It’s still kind of the Wild West out there,” says Patti Urban, a doula in Guilford, Conn.

Insurance typically doesn’t cover costs for a doula. Before hiring one, check whether your local hospital or hospice has a volunteer doula program. But be sure the doula can provide all the hours you want.

The International End of Life Doula Association (www.inelda.org) is compiling an online state-by-state directory of doulas it has trained. The nonprofit has provided the training for hospitals and hospices in California, Indiana, New Jersey and New York, and it will train aspiring doulas in 12 cities this year, says Rakow, the association’s president. Doulas will also work with you in hospices, hospitals, assisted-living facilities and nursing homes.

Decide what you want from a doula. Do you need someone to organize end-of-life documents? Or to provide a 24-hour presence at the bedside? Set up a consultation, advises Merilynne Rush, co-founder of the Lifespan Doula Association, in Ann Arbor, Mich. Be sure your doula’s personality is a good fit. You might prefer a take-charge attitude or a soothing presence.

Most doulas charge an hourly rate. Start out with a few hours before making a larger commitment, Rush says. Ask for a contract spelling out services and fees.

Review a doula’s qualifications and training, including criminal background checks and previous experience. Some attend weekend seminars, while others serve a minimum number of vigil hours and pass exams to become certified.

Other groups that train doulas include MourningDoula.com and the Lifespan Doula Association, which details standards of practice at www.lifespandoulas.com. Doulagivers.com offers a free webinar to learn the basics of caring for a dying loved one.

Complete Article HERE!

Many faith leaders are unprepared to help people make peace with death

Rabbi Laura Geller addresses a room of participants at Temple Emanuel’s conference, “The Next Stage: Looking Backwards and Ahead,” on November 9, 2014.

[C]onfronting sickness and death is part of a faith leader’s job description. Members of the clergy sit with congregants during chemotherapy treatments and pray with them in the midst of pain.

Pastors prepare for this work at seminary, spending a semester working as a hospital chaplain or volunteering at a nursing home. However, some still enter professional ministry unprepared to sit at someone’s bedside and offer advice, according to recent research on religion and end-of-life care.

Many faith leaders are uncertain of when aggressive treatments should be traded for hospice care and confused about what palliative treatments consist of, reports a study in the April issue of the Journal of Palliative Medicine.

Seven in 10 clergy members say it is “somewhat” or “quite a bit” important for them to encourage ongoing treatment for a cancer patient, even when a doctor says there is no hope for a cure, notes a new study in the Journal of Pain and Symptom Management.

This research, as well as other findings from The National Clergy Project on End-of-Life Care, points to a need for ongoing education, according to health experts.

“Poor knowledge of end-of-life care may lead clergy to passively enable congregants with serious illness to pursue … treatments that are associated with increased suffering,” wrote researchers in the Journal of Palliative Medicine.

The National Clergy Project is part of Harvard University’s Initiative on Health, Religion and Spirituality. Program leaders are working on a free end-of-life care curriculum to empower faith leaders, highlighting the important role religion often plays at the end of people’s lives.

“What clergy say — and what they do not say — can make a major difference in whether believers experience a ‘good death,'” the Association of Religion Data Archives reported in its overview of recent research.

Increasingly, palliative care, which focuses on providing pain relief rather than a cure, is seen as a key part of dying well, yet many people, including pastors, find it difficult to give up on intense or invasive treatments.

Accepting that a cure isn’t possible “may be perceived as a decision that undermines one’s faith in a God who may intervene with a miracle through medical treatment,” wrote researchers in the Journal of Pain and Symptom Management.

These researchers and other experts at The National Clergy Project on End-of-Life Care don’t want to undermine religious beliefs. But they do want to ensure that faith leaders are informed about medical options before they influence a patient’s decisions.

“Our goal is for patients and families facing difficult medical decisions to receive better spiritual and medical care,” the project website notes.

Around 3 in 4 faith leaders are open to training on end-of-life care, recent research showed.

In addition to seeking out insights from medical professionals, members of the clergy may benefit from organizing conversations about death and dying within their communities. Rabbi Laura Geller, rabbi emeritus at Temple Emanuel of Beverly Hills, has done this as part of a broader effort to understand what people at her synagogue fear as they near retirement.

“The conversations were so rich and powerful that nobody wanted them to end,” she told the Deseret News last year.

Initial small-group discussions on life after retirement grew into a communitywide effort to better serve the needs of older synagogue members. People thought through how to emotionally and spiritually grow even as their bodies aged and illnesses loomed, Rabbi Geller said.

“How do you make meaning in the face of the fact that you’re going to die? That’s what faith communities are supposed to be teaching people,” she said.

Complete Article HERE!

This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide

Nursing professor Cathy Campbell aims to expand palliative care practices in places around the world where it’s existed only informally.

By Christine Phelan Kueter

[E]ach week, as she sits at the bedside of dying patients, University of Virginia nursing professor Cathy Campbell remembers the bad old days of end-of-life care during her early nursing practice in the mid-1980s.

Staff didn’t know how to treat patients, their bodies addled by pain and disease, and treatment had less to do with pain management than with beating back deadly illnesses, she recalled. Even for patients who were moments from passing away, there was great reluctance to offer relief with drugs like morphine and Demerol, so as not “to hasten death.” But death in hospital intensive care units, with wires and tubes snaking from patients’ every orifice, was painfully common.

“There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.”

While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.”

But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress.

Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

“This is what I want to do, where I want to be,” said Campbell, a nurse for 31 years and a palliative care scholar for 25. “The day of death is one day, but there are a lot of other days to provide support in between.”

But if palliative care has more recently expanded into America’s consciousness, beyond our borders its practice is spotty at best, and absent at worse. That absence is felt most acutely in the world’s poorest, most rural regions where chronic illness and death from diseases like HIV and AIDs, malaria and tuberculosis are common.

In many areas, palliative care is anemic due to too few providers. In South Africa, for instance, the patient-nurse ratio is 417-to-1, a reality that pushes many tasks onto community health workers who provide the majority of rural patients’ care. Among those workers – local individuals, some trained, who do home visits and provide a conduit to nurses in charge of vast geographic territories and literally thousands of patients – palliative care knowledge is even less common.

Most community health workers have basic training in bathing and turning bed-ridden patients; perhaps know how to take vital signs, like blood pressure and pulse; and may, too, know something about vectors of disease transmission for some of the region’s most deadly diseases, including tuberculosis and HIV. But palliative care, Campbell said, is “learned on the fly,” even as it’s an increasingly robust part of their job.

Those gaps in knowledge are due to the fact that palliative care concepts haven’t become fully integrated into overseas’ nursing curricula. It all adds up to a perfect storm, Campbell said, even in this era when the World Health Organization has declared access to palliative care “a human right.”

Given these twin realities, Campbell said, a movement to buttress community health workers’ education, skills and reach is afoot, and Campbell is in the thick of the march. She just received a two-year Fulbright Scholarship to augment the bare-bones understanding of palliative care as it exists in two rural provinces of South Africa and Thailand, and how best to broaden it with the support of community health workers.

Campbell’s years of work as a faculty mentor and researcher at UVA’s Center for Global Health have provided invaluable insight into the many issues and tremendous potential of community health workers in rural communities. This summer, Campbell will mentor a team, in collaboration with colleagues at the University of Venda, of Center for Global Health University Scholars for a fourth year of longitudinal research on community health worker engagement in community care.

With the Fulbright, Campbell and her UVA research assistants will conduct focus groups with 60 rural community health workers across Thailand and South Africa to discuss the cases they see and document how they handle them, in order to determine what types of educational and training programs make the most sense. Their ultimate aim is to expand palliative care practices in places where it’s existed only informally.

Campbell has already observed community health workers’ appetite for training in palliative care in particular – “they’re eager for it,” she reports – and in many cases, the most experienced and seasoned workerss are likely to receive training and education and then return to their peers to train them.

Community health workers, Campbell said, are the linchpin to expanding developing nations’ palliative care reach into the rural communities that need it.

“We can train CHWs to do more, because they’re really the ones doing the work,” Campbell said. “They’re a community treasure.”

Complete Article HERE!

How GPs can handle conversations about end-of-life care

Talking to patients about end-of-life care is not easy even for experienced health professionals, says Dr Pete Nightingale, but following simple guidelines can make the process easier.

By Dr Pete Nightingale

[A]s a GP, you are likely to have had many patients in your care with a life-limiting condition, or who are approaching the end of their life. Speaking honestly about death with someone who will soon face it themselves can be daunting, but can also be extremely rewarding.

A new report by Macmillan Cancer Support, No Regrets, explores the taboo around death, and included the worrying revelation that while 76% of people with cancer have thought about their own death, just 8% of these have shared their feelings with a healthcare professional.

This is concerning for a few reasons. I’d hate to think that any of my patients could be suffering in silence, feeling they cannot share their concerns with me.

GPs and their teams have the potential to play a significant role in helping people work through an Advance Care Plan. Macmillan has found that when healthcare professionals have a record of where someone would like to die, they are nearly twice as likely to die in the place of their choosing.

But talking isn’t always easy, so here are some tips:

Starting the conversation

Some people will make it clear that they are ready to start talking about it, but some may be waiting for a professional to bring it up. You could try a gentle prompt, such as, ‘many people at times like this want to discuss the future’.

Listen to the patient rather than talking yourself

People with an incurable diagnosis may value a sense of control so follow their agenda as much as possible in conversations. Some people, when they are nervous, try to cover this up by talking, but all you need to do is show you are listening. Reflecting what  the patient says back to them can be a reassuring way of letting the patient know you are listening.

Think about including a family member in the conversation

Ask if they want someone close to them to be present. It can provide support for the patient and can also help ease communication within families. Some families shy away from discussing Advance Care Planning, so emphasise the importance of letting the patient talk about the future, if that’s what they want.

Focus on personal preferences

Support the patient in talking about what they would like to happen and what a ‘good’ death means to them. This can include anything from pain relief, location, whether they want their family members present, religious or spiritual needs, or more. Be prepared for the conversation to be more wide-ranging than their clinical needs.

Don’t rush

As GPs, we have an increasingly hectic working life. But remember, there is no time-scale for completing an Advance Care Plan. You can carry the conversation into other appointments, or ask other primary care staff to help.  Help could come from members of  the nursing team or trained care administrators and in some areas trained volunteers are involved.

Ask open questions, listen, then record and share (with permission)

If the patient allows it, let their wishes be known to family, key professionals and out-of-hours services, ideally electronically so they’re accessible.

Be honest

It may be tempting to offer false reassurance to comfort the patient. This can be misleading and prevent the person from coming to terms with what is happening. Phrases like ‘don’t worry’ may seem comforting, but they also imply that you are unwilling to answer difficult questions.

It’s ok not to have the answers

You may feel anxious that you won’t be able to answer all their questions, but you don’t have to have all the answers. Be honest, and say ‘I actually don’t know, but let me find out for you’.

Take opportunities when they arise

If you have the chance to complete an Advance Care Plan with someone, or even just start the conversation, take it! Even if they seem well, remember that there may not be more opportunities to have this chat with them, and people can deteriorate quickly. It’s better to have the conversation sooner rather than later.

Complete Article HERE!

So, you want to hire a death doula?

Three things to consider

By Amy Wright Glenn

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.

But, what about death?

How many Americans have heard of “death doulas”?

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.

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.”

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.

  1. 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.
  2. 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.
  3. 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.

Complete Article HERE!

‘Living well is a daily choice, dying well takes planning’

by Liz Walsh

[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.

Complete Article HERE!