Death with dignity

When end-of-life wishes collide with untenable costs

My grandmother and grandfather celebrating their 50th anniversary.


[I]ntellect was the core of my grandmother’s identity. Rita loved reading biographies, watching dramas, and traveling to new countries. But about ten years ago, her mind began to deteriorate. Now she cannot read, speak or recognize people — the antithesis of her previous intellectual self.

Then she lost the ability to eat. When a piece of food went down the wrong pipe three years ago, her lungs filled with fluid and the pneumonia that followed brought her and the entire family to the hospital. The doctor suggested we consult a palliative care specialist and let her die peacefully. The alternative was to insert a feeding tube.

Rita had recorded her end-of-life wishes. The document reads, “I feel especially strongly about the following forms of treatment … I do not want tube feeding.” But the same document also assigned her health care decisions to my grandfather. And he couldn’t let her go. “She doesn’t know how great the new technology is,” he stressed.

Despite Rita’s explicit wishes, she sits on the couch now, her vacant gaze fixed to the TV screen where Mary Poppins plays on repeat. She doesn’t comprehend that the vivid world in which Julie Andrews sings and dances is one she used to inhabit too.

For some, innovative devices like Rita’s feeding tube are a medical miracle. For others, they prolong a painful and unwanted existence. Even though Rita wanted to die at the natural time, she lost the mental capacity to execute that decision.

When faced with a terminal illness, many mentally competent people recognize the harrowing challenges ahead. These challenges span from loss of autonomy, like my grandmother’s case, to physical deterioration and excruciating pain. To allow these patients more freedom in determining their future, six states have legalized physician-assisted dying.

But even that path has hurdles, as the price of the conventional life-ending medication Seconal has ballooned to upwards of $3,000 under pharmaceutical giants prowling for profit. The steep price has driven doctors, mortally-ill patients and health care experts to wrestle with financial inequality at the final moments of life.

“It’s an example of inequities in our health care system. People have a right to do something but they don’t have a right to get it at a reasonable price,” says Dr. Stuart Youngner, a professor of bioethics and psychiatry at Case Western Reserve University.

Washington state legalized physician-assisted dying in 2008, and the price of Seconal has gradually risen from a few hundred dollars to over $3,000, according to a study published in JAMA Oncology. The highest increase was in 2015, when the Canadian pharmaceutical company Valeant Pharmaceuticals acquired the drug and doubled its price from $1,500 to $3,000.

The increase occurred a month after aid-in-dying legislation was introduced in California, potentially expanding Seconal’s market. Valeant Pharmaceuticals stated that the price was determined by multiple factors including generic alternatives and development costs. (Although the drug has been available since the 1930s.)

This certainly isn’t the first time Valeant has garnered criticism. State and federal agencies have launched multiple investigations into the company’s troubling prices and practices. And Valeant isn’t the only culprit. In December, the Senate investigated high drug prices, and the constant need for pharmaceutical companies to repay investors created a “business model that harms patients, taxpayers and the U.S. health care system,” according to their report.

“What does it mean with yet another instance of pharmaceutical companies seeming to increase the cost of medicines to artificially drive up prices?” asks bioethicist Dr. Robert Arnold, director of the Palliative and Supportive Institute at the University of Pittsburgh Medical Center. “It seems to me that that question isn’t unique to this issue. That question has happened an enormous number of times over the last couple years.”

“As a society,” he continues, “how do we deal with these issues of man-made shortages of medicine?”

A team of doctors in the Northwest grappled with just that question. Doctors at End of Life Washington counsel terminally ill patients and their families about end-of-life options. Some clients couldn’t afford Seconal. Others couldn’t fathom shelling out thousands of dollars to simply die a peaceful death. So seven doctors got together to create a less expensive life-ending medication.

“We all felt responsible for giving patients another option that would be affordable,” says Dr. Therese Law, the medical director of End of Life Choices Washington and a retired physician of 35 years who helped develop the medication.

The team participated in meetings and conference calls over the next few months. They discussed various compounds and dosages that could be used for the lethal mixture. The medication would be prescribed by a physician and obtained at a compounding pharmacy, which dispenses medications whose components and dosages are tailored to the individual patient.

“I think it was a very careful deliberation between pharmacists and prescribing physicians and cardiologists. We talked about various different medications and their effects and their side effects,” Law says.

The doctors had to continuously assess the medication. A few family members reported that the first combination led to a painful burning sensation in the person’s throat. The second version made some deaths take too long. The doctors are currently gathering data to research a third protocol.

“Their intent I do not challenge, nor do I challenge the patient’s desire to have this done. I’m wondering about if their execution of their goals might not be optimal … Is there a better way of approaching the problem?” says Dr. Maurie Markman, the president of Medicine and Science at Cancer Treatment Centers of America.

Part of the problem is that a perfect parallel does not exist. Canada legalized euthanasia last year, in which a doctor uses a lethal injection to hasten a patient’s death. In Europe, drugs called barbiturates are often used, but Americans can’t purchase them, as the European Union applied sanctions to limit barbiturate exports to the United States in opposition to its death penalty.

Should physicians devote their time to helping patients circumvent pharmaceutical greed? This doesn’t seem like the way doctors should spend their time or the way patients should get their healthcare. And Seconal represents a particularly poignant example, since terminally ill patients have often spent an enormous amount of money on medication already.

“In a sense it’s ironic, because a lot of the critics of physician-assisted suicide are worried that poor people will be taken advantage of,” Younger says. “It looks like in this case poor people will be discriminated out of it, not discriminated into it.”

My grandmother is stuck in a manmade medical purgatory, a state she never would have chosen for herself. To some it represents progress, but to me, it’s hard to watch. As society continues to propel medicine forward, we need to allow people choice in how they die. And the right to a dignified death should extend to everyone — regardless of how much money is in their wallet.

Complete Article HERE!

You may not be able to get buried the way you want to in Colorado

By Oscar Contreras

[P]eople don’t generally think about how they want to celebrate the inevitable, but a few do. They may want a traditional party or they may want something more unusual: A sky burial in the mountains, a Viking funeral by a lake or if they’re really into history, they may want to get mummified.

If you’re among the few, you may want to rethink your options. But before we go into the why, let’s review some of these funeral practices.

What is a sky burial, a Viking funeral and mummification?

A sky burial, also known as a celestial funeral, is a simple practice in Tibetan culture where a corpse is left on a mountaintop to be devoured by birds of prey.

According to Tibet Vista, in Tibetan Buddhism philosophy it is believed that if vultures feed off the dead body, the dead has no sin and that their soul has gone peacefully into the heavens.  

Strangers are not allowed to attend the ceremony and family members are not allowed to be present at the burial site.

A Viking (Norse) funeral is generally thought to have been the preferred method for disposing of a body in the Nordic countries. Legend has it that warriors and other high-ranking people were sent sailing away and were set ablaze so that their bodies had a higher chance of reaching Valhalla.

We said “legend” because that’s not how Nordic peoples disposed of their dead. Yes, it is true – you’ve been fooled by Hollywood once again.

Norse funerals actually involved making burial plots shaped as ships marked by stones, according to TheFuneralSource.

Cremation did take place, but it did not involve a boat sailing into the sunset.

The deceased were also disposed of with their goods they used in life, so they could use this in the afterlife.

Mummification is the process by which the skin and flesh of a dead person can be preserved for thousands of years, as was the case with pharaohs in ancient Egypt.

While the practice has died out, a company in Utah is offering “modern mummification” and not just for you – your pet can also join you in the afterlife if you so desire.

Tough luck, Colorado

If you left a mark in life and wanted to leave one in death, you may not want to have your body disposed of in the state of Colorado.

“Final disposition” of a body is defined by Colorado law as disposing of human remains by means of “entombment, burial, cremation, or removal from the state.”

Nowhere in the law is it stated that you are allowed to have a sky burial, a “Viking funeral” or get mummified by your relatives.

Allowed burial practices in the state of Colorado

There is no law that prevents you from burying a loved one on private property. But – there’s always a but – the burials must be recorded with your local county clerk 30 days after the burial has taken place. 

Check with your county clerk before taking this step.

The same goes for scattering ashes – you must check with your local city and county offices to see what the regulations are and if you can proceed with the decedent’s wishes.

Want to scatter ashes in national lands, like Rocky Mountain National Park? It is allowed! But you have to have a permit to do so.      

Green burials, a growing trend in Colorado 

Less costly goodbyes known as “green burials” are growing in popularity in Colorado.

Natural Funeral, a Lafayette-based funeral service business, is helping people die as naturally as possible with minimal impact to the earth.

So what’s a green burial or natural funeral? It involves having the body placed directly into the ground in a pine casket or shroud. There is no fancy headstone, concrete vault, or costly casket. Instead, the company uses flat granite markers.

The green funeral home is hoping to open by this summer

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!

Can Comfort Care At The ER Help Older People Live Longer And Suffer Less?

As baby boomers age, more older Americans are visiting the emergency room, which can be an overcrowded, disorienting and even traumatic place.

By Melissa Bailey

[A] man sobbed in a New York emergency room. His elderly wife, who suffered from advanced dementia, had just had a breathing tube stuck down her throat. He knew she never would have wanted that. Now he had to decide whether to reverse the life-sustaining treatment that medics had begun.

When Dr. Kei Ouchi faced this family as a young resident at Long Island Jewish Medical Center, he had no idea what to say. The husband, who had cared for his wife for the past 10 years, knew her condition had declined so much that she wouldn’t want to be rescued. But when Ouchi offered to take out the tube, the man cried more: “She’s breathing. How can we stop that?”

Ouchi had pursued emergency medicine to rescue victims of gunshot wounds and car crashes. He was unprepared, he says, for what he encountered: a stream of older patients with serious illnesses like dementia, cancer and heart disease — patients for whom the life-saving techniques he was trained to perform often only prolonged the suffering.

As baby boomers age, more of them are visiting the emergency room, which can be an overcrowded, disorienting and even traumatic place. Adults 65 and older made 20.8 million emergency room visits in 2013, up from 16.2 million in 2000, according to the most recent hospital survey by the Centers for Disease Control and Prevention. The survey found 1 in 6 visits to the ER were made by an older patient, a proportion that’s expected to rise.

Half of adults in this age group visit the ER in their last month of life, according to a study in the journal Health Affairs. Of those, half die in the hospital, even though most people say they’d prefer to die at home.

The influx is prompting more clinicians to rethink what happens in the fast-paced emergency room, where the default is to do everything possible to extend life. Hospitals across the country — including in Ohio, Texas, Virginia and New Jersey — are bringing palliative care, which focuses on improving quality of life for patients with advanced illness, into the emergency department.

Interest is growing among doctors: 149 emergency physicians have become certified in palliative care since that option became available just over a decade ago, and others are working closely with palliative care teams. But efforts to transform the ER face significant challenges, including a lack of time, staffing and expertise, not to mention a culture clash.

Researchers who interviewed emergency room staff at two Boston hospitals, for instance, found resistance to palliative care. ER doctors questioned how they could handle delicate end-of-life conversations for patients they barely knew. Others argued that the ER, with its “cold, simple rooms” and drunken patients screaming, is not an appropriate place to provide palliative care, which tends to physical, psychological and spiritual needs.

Ouchi saw some of these challenges during his residency in New York, when he visited the homes of older patients who frequently visited the emergency room. He saw how obstacles like transportation, frailty and poor vision made it difficult for them to leave the house to see a doctor.

“So what do they do?” Ouchi asks. “They call 911.”

When these patients arrive at the emergency room, doctors treat their acute symptoms, but not their underlying needs, Ouchi says. In more severe cases, when the patient can’t talk and doesn’t have an advanced directive or a medical decision-maker available, doctors pursue the most aggressive care possible to keep them alive: CPR, intravenous fluids, breathing tubes.

“Our default in the ER is pedal to the metal,” says Dr. Corita Grudzen, an emergency physician at NYU Langone Medical Center who studies palliative care in the ER. But when doctors learn after the fact that the patient would not have wanted that, the emergency rescue forces families to choose whether to remove life support.

When older adults are very ill — if they need an IV drip to maintain blood pressure, a ventilator to breathe, or medication to restart the heart — they are most likely to end up in an intensive care unit, where the risk of developing hospital-acquired infections and delirium is increased, Grudzen says. Meanwhile, it’s not clear whether these aggressive interventions really extend their lives, she adds.

Some have sought to address these problems by creating separate, quieter emergency rooms for older patients. Others say bringing palliative care consultations into regular emergency rooms could reduce hospitalization, drive down costs and even extend life.

There’s no hard evidence that this approach will live up to its promise. The only major randomized controlled trial, which Grudzen led at Mount Sinai Hospital in New York City, found that palliative care consultations in the emergency room improved quality of life for cancer patients. It did not find statistically significant evidence that the consultations improved rates of survival, depression, ICU admission or discharge to hospice.

Trying to avert suffering

But frontline doctors say they’re seeing how palliative care in the ER can avert suffering. For instance, Ouchi recalls one patient — a man, in his late 60s — who showed up at the emergency room for the fifth time in six months with fever and back pain. Previous visits hadn’t addressed the underlying problem: The man was dying of cancer.

This time, a nurse and social worker called in a palliative care team, who talked to the patient about his goals.

“All he wanted was to be comfortable at home,” Ouchi says. The man enrolled in hospice, a form of palliative care for terminally ill patients. He died about six months later, at home.

Now Ouchi and others are trying to come up with systematic ways to identify which patients could benefit from palliative care.

One such screening tool, dubbed P-CaRES, developed at Brown University in Providence, R.I., gives ER doctors a list of questions. Does the patient have life-limiting conditions such as advanced dementia or sepsis? How often does the patient visit the ER? Would the doctor be surprised if the patient died within 12 months?

Doctors are using the tool to refer patients at the University of California-San Francisco Medical Center at Parnassus to palliative care doctors, says Dr. Kalie Dove-Maguire, a clinical instructor there. The questions pop up automatically on the electronic medical record for every ER patient who is about to be admitted to the hospital.

Dove-Maguire says UCSF hasn’t published results, but the tool has helped individual patients, including a middle-aged man with widespread cancer who showed up at the ER with low blood pressure. The man “would have been admitted to the ICU with lines and tubes and invasive procedures,” she says, but staff talked to his family, learned his wishes and sent him to home hospice.

“Having that conversation in the ER, which is the entry point to the hospital, is vital,” Dove-Maguire says.

Measured in minutes

But time is scarce in ERs. Doctors’ performance is measured in minutes, Grudzen notes, and the longer they stop to make calls to refer one patient to hospice, the more patients line up waiting for a bed.

Finding someone to have conversations about a patient’s goals of care can be difficult, too. Ouchi enlisted ER doctors to use the screening tool for 207 older ER patients at Brigham and Women’s Hospital in Boston, where he now works as an emergency physician. They found a third of the patients would have benefited from a palliative care consultation. But there aren’t nearly enough palliative care doctors to provide that level of care, Ouchi says.

“The workforce for specialty palliative care is tiny, and the need is growing,” says Grudzen.

Palliative care is a relatively new specialty, and there’s a national shortfall of as many as 18,000 palliative care doctors, according to one estimate.

“We’ve got to teach cardiologists, intensivists, emergency physicians, how to do palliative care,” she said. “We really have to teach ourselves the skills.”

Complete Article HERE!

‘Passing away’, ‘kicking the bucket’ and ‘pushing up daisies’: How we avoid talking about death

Knowing how to communicate about death gives us the language to discuss end-of-life topics.

By Deb Rawlings, Christine Sanderson, Deborah Parker, Jennifer Tieman and Lauren Miller-Lewis

[T]alking about death and dying is taboo in many parts of the world.

So it’s no wonder many people avoid talking about it. Or they struggle to find the right words.

Whereas once, we were more comfortable talking about death, now we have become creative in avoiding talking about it.

We resort to euphemisms (alternative words that are softer or less direct) to soften the blow.

For instance, we talk about people “passing” or “gone” rather than they’ve died or are dead, just two examples from a rich history and range of euphemisms we discovered in our research.

What we did and what we found

We ran an online course, open to anyone around the world, on death and dying.

The aim was to open conversations about the topic, and to promote understanding about death as a natural part of life.

Over two years, we asked 3,116 participants from 39 countries about how they talked about death and dying.

They told us of alternative words or phrases to describe death instead of the words “death” or “dead”.

They volunteered varied, often humorous alternatives such as: “wrong side of the grass”, “taking a dirt nap”, “worm food”, “cashed in their chips” and “staring at the lid”.

But the most widely used euphemism was “gone”. Variants of “passed” were also very popular, like “passed away”, “passed over” and “passed on”.

Some of the euphemisms we found for death and dying. The larger the print, the more common they were.

There were also historical phrases that still make sense today, such as: “shuffled off” or “shuffled off this mortal coil,” from Shakespeare’s Hamlet (published early 1600s); “six feet under” (from around 1665, referring to how deep plague victims needed to be buried); and “promoted to glory” (used by the Salvation Army since the 19th century).

One common Australianism was “carked it” (also spelled “karked it”), a phrase that confused participants from other countries.

Some participants said euphemisms were acceptable if it was culturally inappropriate to be more direct.

This was particularly so for Aboriginal and Torres Strait Islander participants, who preferred “finishing up” and “passed away”.

Other culturally specific euphemisms included: the UK’s “gone for a Burton” (used by the armed forces in World War II) and Cockney rhyming slang “brown bread” (rhymes with dead).

Participants from the US reported “crossed into Beulah land” (from the book The Pilgrim’s Progress) or “sleeping with the fishes” (from the movie The Godfather).


How and why do we use euphemisms?

People mainly said they used euphemisms because the words “dead” or “dying” could upset people or were too harsh.

Some participants said they had heard many euphemisms, but wouldn’t dream of using some, for instance “kicked the bucket”, for fear of causing offence.

Most participants said they speak openly about death and dying but could understand why others don’t.

Over two-thirds of participants were health professionals, and while many of them were comfortable talking in plain language, they often used the phrase “passed away” in some situations rather than “died”.

Many participants use euphemisms when others do, and are guided by them in conversation.

Is this a problem?

Does it really matter if people use such euphemisms? Not always.

But sometimes euphemisms can lead to misunderstandings and confusion. Think of the commonly used “gone”.

One participant talked of an aunt who was waiting to hear about the health of her husband.

The aunt received a phone call telling her that her husband had “gone” so she asked which nursing home he was transferred to.

The caller had the awkward task of clarifying her husband had died.

Then there’s the word “lost”. One participant received a phone call from a friend who had “lost” her mum:

I was confused and said, “Why? Where did she go? How can she be lost?

Other participants talked of receiving condolences such as “I’m sorry you have lost your son,” only to wonder whether they should feel careless in misplacing him.

Communicating about death and dying is important

Euphemisms have their place. But being able to talk openly (and clearly) about death and dying is important as it helps normalise death and avoids confusion.

If health professionals use euphemisms, they need to consider whether patients really understand what they’re trying to say.

And normalising death and dying (and communicating it) helps us prepare for the death of someone we love, or to find the right language to make the best choices for end-of-life care or for a funeral.

Complete Article HERE!

When my dad was dying, we forgot to ask him how he wanted to live

Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face

By Sarah Dew

When it comes to end of life care, we talk about dying. But in my experience, care at the end of life should not be not about death – it should be about life.

My Dad was a man full of wonder for the world. He loved nothing more than being outside, on a mountain bike or with a camera in his hand. He preferred to have a few, meaningful and close friendships than a wide group of acquaintances. He didn’t like lie-ins, or mayonnaise. He had blue eyes, and a particularly aggressive form of colon cancer that killed him within three and a half months of diagnosis, aged 57.

Cancer car-crashed its way into all of our lives, and following in its wake were a merry-band of professionals ostensibly there to care for him. The arrival of new people at our doorstep was relentless. Suddenly, my father, a man who invested deeply in knowing and understanding people, was surrounded by people who didn’t know him at all. This was clear from the first of many district nurse visits to our home. The nurse didn’t know how recently and rudely cancer had come into our lives. “I guess you’ve been fighting this for a good while,” she said. She talked about her grandson’s visit the weekend before. She didn’t know how much Dad wanted to have grandchildren.

Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face. They told us they’d visit sometime the next day. And so we waited. And Dad lost another precious opportunity to be out in the world he didn’t want to leave.

Suddenly, my strong, capable, energetic family were paralysed in a system that we didn’t understand, and that didn’t understand us. We had to wait for information, to fire fight the latest deterioration, and desperately live out the time we had left once the calls and the visits were done.

After my Dad died, I began to work on a programme to improve end of life care in South London. When it comes to improving end of life care, calls are repeatedly made for more palliative care services, for better access to pain control, for better planning. All of these help – no-one should die in pain, in a place they did not choose, and without the support they need.

But the end of life is not just about dying. It is about living well, right up until the end. And throwing more professionals at “the problem” of dying will not enable us to die well (nor do we have the resources to do so). We must start with what it means to live well – for my Dad, to be outside, with the people he loved to share his life with, reflecting on the wonder of a life well lived and the pain of a life lost too soon.

None of this is expensive to provide. But it requires fundamentally reframing what we understand care at the end of life to be.

Caring for people at the end of life means enabling people to live out their final days as they wish, helping them to reflect on the life that they’ve lived, and supporting them with the emotional and physical challenges that dying forces us to confront. Determining what this care looks like for each individual, and how it is provided, need not be led exclusively by professionals. In fact, it can and should be a partnership with our families, friends and neighbours.

As the power of medicine to extend and protect life advances year on year, we’ve handed responsibility for guarding against death to medical professionals. So too have we asked these professionals to “own” dying – to set the agenda about what end of life care looks and feels like, to lead the planning and choices we make, to initiate conversations, and even to make judgements about the best course of action. This expectation is unfair on those professionals, on those that are dying, and those that love them. Death is not simply a medical phenomenon – it is a social and emotional one, and that balance should be reflected in how we collectively set the agenda for what shape end of life care takes.

An army of professionals cannot meet all the needs of the dying and the bereaved. Professionals must share their knowledge with the loved ones that want to care, and we must all be courageous and upskilled in supporting our friends, families and neighbours, in death as in life. Our society and our health service must recognise the role we can, and must, all play in supporting people that are dying to live well, right until the end.

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.

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