The Legacy of Jon Underwood

Jon Underwood was the founder of Death Cafe, a movement that brings people together over tea and cake to talk about death and mortality and the finitude of life.
He pioneered a breaking down of the taboo surrounding death in order to allow people to experience life more fully. 

Jon died suddenly on June 25, 2017 from a brain hemorrhage caused by undiagnosed leukemia. His sudden death has

been a terrible shock for his family, wife and young children but the fact that he dedicated his life to really facing death and living fully in each moment offers some sense of relief for his loved ones.

It also offers something to us. 
The work of the Death Cafe has stretched far and wide across the globe with over 1000 Death Cafes in more than a dozen countries. Jon's dedication to this movement has helped shift the culture around death and dying, promoting openness and empowerment when it comes to death and subsequently, life.

You know you have a certain time left, and then the question is, What is important for me to do in that time? That’s different for everyone, so talking about death, for me at least, is the ultimate prioritization exercise.
— Jon Underwood in a BBC interview in 2014.

The Death Cafe movement will continue to grow with Jon's sister Jools Barksy and mother Sue Barsky Reid taking the reigns and committing to Jon's vision for the movement.

In 2014 a group of Death Cafe hosts from Australia had the privilege of talking with John about Death Cafe as part of the lead up to Dying to Know Day. Our goal was to encourage D2KDay hosts to consider hosting a Death Cafe. He was very generous with his time and we were so grateful for his support in the formative years of #D2KDay. 


A crowdfunding initiative has been set up to assist his wife and children as they find their feet and adjust to life without Jon.


We have been moved and inspired by the work of Jon through the Death Cafe movement and we encourage you to contribute in any way you can.

"We Did That Well." Imelda Gilmore shares her story.

Imelda and Graham Gilmore.

Imelda and Graham Gilmore.

You know, there really aren’t too many certainties in life. We can have ideas about whom we would like as a life partner, what sort of wedding we want, how many children we want, what they will be like, what career path we want to follow, how we want to spend our retirement, etc. The truth is that there is really only one event which is absolutely certain to happen and that’s the ending of our life here on this small blue planet. We know we will die one day.

It makes a great deal of sense to start talking to those we love about our feelings, wishes and values when it comes to our end-of-life journey because it’s quite likely our loved ones will be the people who will be guiding us through this event.

When my beautiful young husband was diagnosed with young onset Alzheimer’s disease, I was aware that this is a terminal illness and that the prognosis for young onset is classically a relatively short period from diagnosis to death. For this reason, even though my husband was in reasonable health at the time, we had the conversation about the sorts of things that we did and didn’t want to happen for either of us in our end-of-life journey, whenever that might happen.

I completed an Advance Care Plan for each of us, where we indicated that we didn’t want invasive or extraordinary treatments which would only prolong life for a short time and which in all likelihood would not contribute to our quality of life. These included intravenous antibiotics (should it be impossible to administer these orally) CPR and tube feeding.

In February 2016, a fall resulted in Graham’s being unable to resume walking; this meant that he was either in bed or in a bean chair for most of his waking hours. At this point he still seemed to be physically “well”, although becoming more frail, so it was time to have a conference with management to set up Graham’s palliative care plan. There were quite a number of areas of his care which needed to be documented, such as skin integrity and fluid consumption. However, with absolutely no indication of how long this palliative stage would be or which organ failure would cause his death, there needed to be the additional questions about what action should be taken in a crisis.

In addition to the no-invasive-treatment instructions, I wanted Graham to be able to die “at home”, so I said I didn’t want him moved to hospital unless there was an emergency situation which could not safely be managed by nursing home staff. I wanted Graham to be in an environment which was familiar; the hospital environment for someone with late stage dementia is a nightmare of noise and light and painful handling or treatment.

The next few months saw Graham resume the ability to walk; however, at the end of August 2016, he again fell and, having broken his kneecap, the resultant confinement to bed was to prove permanent.

On October 19, I received a phone call from a doctor who had been called in out-of-hours to attend to Graham. Her first statement was that she had read his Advance Care Plan; he had contracted asphyxiation pneumonia and she wanted to know whether I wanted her to abide by Graham’s wishes regarding no intravenous antibiotics. Even though the news wasn’t good, I was extremely encouraged that someone had read Graham’s instructions (the first time anyone outside of the nursing home had done this). I told the doctor, yes, that was what Graham wanted and I would honour his wishes. Her comment was that treatment only had an expected 50% success rate anyway; it’s also apparent that the chances of recurrence were very high.

The next few days were very full, with all sorts of emotions filling the room as our family came to be with Graham in this, his final journey. Nursing home staff bent over backwards to care for us all as we surrounded Graham with love and tears and laughter and music. We even had our little 3-month-old granddaughter in the room much of the time – a great delight and a distraction. We constantly monitored Graham’s signs of wellbeing or distress and worked with staff to ensure that whatever comfort and help he could be given was available, even so far as saying “don’t turn him now – he’s seeming to be comfortable and we don’t want to disturb that comfort”.

On different nights, some family members were able to sleep in a downstairs lounge room; I spent alternate nights in the room with Graham, sleeping on the bed beside him. I will never forget the love expressed by a night nurse as she brought a blanket and tucked me in: expressions of love and compassion like this are a healing balm at a time when there is so much emotional pain.

At 3.38am on Wednesday 26 October, just 5 minutes before I arrived back at the nursing home, the beautiful night staff were sponging Graham when they noticed that he simply hadn’t taken that next breath: he had slipped away. My prayer had been that I could be with Graham as he died, but I had asked God that if I couldn’t be there, would He make sure that Graham wasn’t alone – and He did!

I believe I was given a huge gift in that when Graham’s end-of-life journey was completed, I was able to say “we did that well” – and I include in this everyone who had a part to play in those last days.

I can’t put into words how great an emotional healing can begin, if we get the chance to honour our loved one’s wishes as we see them through to the end of their life.

Imelda Gilmore.

 

For more information on Advance Care Planning, go to https://www.advancecareplanning.org.au/

5 things I experienced being a Carer - John Rosenberg

I’m a palliative care researcher … and a son. So when my 85 year old dad was told he would die soon, I walked the tightrope between my professional capacity as a palliative care nurse and as Wim’s youngest son. 

An inpatient in a large, tertiary hospital in a major metropolitan centre in Australia, he was receiving good palliative care in the specialist inpatient unit; however, it was his – and all of our family’s – wish that he return to his home town for his end-of-life care.
The problem? “Home” was a four-hour drive away, and it was suggested he was too sick to travel and could even die in transit. This was discussed at length with my parents and all the family, checking and rechecking that the full implications were clear. But dad was crystal clear about one thing. “For the third time!” he said, “I want to go home, or die trying.”

We got him there.
Dad spent his final days in the 9-bed hospital in his rural home town. And as both the ‘palliative care nurse in the family' and a son, I had the privilege of providing his care during his transfer home and in his last days.  

So often in my work as a community palliative care nurse, I’ve encountered people with ‘a nurse in the family’ or ‘my friend who’s a GP’. This would bring a couple of things – clinical knowledge, and an ability to navigate a monolithic health care system. Other families were fierce and effective advocates for their dying relative. Others still were too distressed, or too tired, or too busy doing care to navigate the system. We were lucky – as a son, and as family, we had the capacity to provide dad’s care. Not that that made it easy. But we did it.

5 things I experienced being a carer:

1.      Someone’s got to have the helicopter view to keep track of everything. This can free up others to attend to the detail.

2.      Handing over parts of our family’s ‘operations’ was invaluable – one to ‘run the house’, another to look after the money, another to coordinate the flow of information, and so on.

3.      To make it happen, we had to be brave. Sometimes we weren’t so much, and other times we really, really were.

4.      It’s really tiring.

5.      Being a family carer is not about being one thing. Even being in the business of palliative care, I’m still my father’s son.

 

Dr John Rosenberg is registered nurse with a clinical background in community-based palliative care. As a active researcher since 1999, he has focused upon social models of health care, the application of health promotion principles to palliative and end of life care, and community development approaches to the support of dying people.
You can read more about him and view his published works here.

5 Reasons to Get Comfortable With Death by Karen Wyatt MD

One thing (among many) that spending time with dying patients has taught me is to be comfortable with Death. After sitting with many patients through their own journeys to the end-of-life, I no longer fear my own dying. Instead, I view it as the next adventure, with much to explore and learn from. In contrast to most of our society, I think about Death every day and find I am curious about stories, articles, music, and art that deal with the end-of-life.

So I would like to introduce you to my friend Death, known by some as the Grim Reaper or Thanatos. Death is not nearly as frightening or sad as you may have heard, but you’ll have to trust me on that until you get to know Death more intimately for yourself. I encourage you to strike up a friendship of your own, perhaps by volunteering at a hospice or nursing home. If you’re not sure this is a good idea, here are five reasons to get comfortable with Death:

1. It’s going to happen no matter what you do.

Yes, Death is inevitable and it will visit you whether you prepare for it or not. The most irrational aspect of our societal denial of Death is the overwhelming evidence that it exists and cannot possibly be avoided. So rather than waste your energy trying to pretend you’ll never die, take a deep breath and step into the real world of mortality. You’ll find it’s not so bad here.

2. Death is an essential part of Life on Earth.

Spend a little time studying nature and you will soon recognize that Death is a key component of all living things. No tree, flower, blade of grass or tiny insect could exist without the nutrients obtained from the Death of another living thing. The cycle of Life was created to include both Birth and Death and it’s a beautiful thing when you stop to think about it. Death is all around us, all the time, enabling Life to occur and persist. Death is truly Life’s best friend.

3. Death is Universal.

No matter what issues divide us from other people here in our country and around the globe—race, religion, beliefs, economic status, culture, lifestyle—there are two threads that ultimately bind us together with every single being on the planet: each of has been born and each of us will die. This is a profound reality: Death is the one thing we have in common with absolutely every other human being. We all face that ultimate outcome and we all struggle in our own ways with that reality. Here is the impetus for compassion for all others: regardless of our differences we share the sting of mortality. I believe it is a pathway toward peace and understanding for all mankind to share our common pain and fear of Death, learn from one another, and let Death connect us as human beings.

4. Death brings an end to suffering.

I have worked with many elderly folks, my own mother included, who confessed that they were waiting patiently for Death to come. After many years of living a good life they were feeling tired and their deteriorating physical bodies, which had carried them through so many adventures and difficulties, were now the source of suffering. When life becomes too painful to bear, Death is a friend that mercifully brings an end to the agony. Knowing that Death will, without fail, come to bring us home is a source of comfort for those in the midst of great pain.

5. Death makes each moment precious.

When we recognize that life is limited and will one day end, we can utilize this knowledge to bring deeper meaning to every moment. We learn to savor each experience of life because it may not come our way again. Death points us toward living life as fully as possible, while honoring what really matters, like Love and Forgiveness. “Life is fleeting,” Death whispers to us, “waste not one breath.”

So no matter what your current situation is, stop for one moment and consider the fragility of your own life. Can you make room for Death to enter your thoughts every now and then? Can you get comfortable with the idea of Death as part of your life? You have much to gain from getting comfortable with Death ... the best friend that will never desert you.

*This was shared with permission by the author. Find the original story on the Huffpost Blog here.

About the Author:
Dr. Karen Wyatt is a hospice and family physician and the author of the award-winning book “What Really Matters: 7 Lessons for Living from the Stories of the Dying.” She is a frequent keynote speaker and radio show guest whose profound teachings have helped many find their way through the difficult times of life. Learn more about her work at www.karenwyattmd.com.

Dying to Know in the Workplace

It can feel challenging to talk about death and dying at work, but when we seek to generate more compassionate communities, an understanding of bereavement and empathy in the workplace is essential.
Social worker Simone Hallett ran a Dying to Know Day event at her workplace in 2016,  
"It was just a small scale event to mark the day but actually went really well- better than I thought it would; was about 15 of us and we each had to draw a different topic out of a hat and talk to that topic. It was thought provoking, enjoyable and a real departure from our general workplace conversations."

Simone has kindly shared some of the questions that sparked quality discussion at her event. Feel free to use these as inspiration for your own event. We'd love to hear how you go.

Questions:

  • Does consciousness survive death?
  • What constitutes a good death?
  • What would the world be like if there was no death?
  • How did your family handle the subject of death, or death itself, growing up? What impact did that have on you?
  • Will you be cremated or buried? Why?
  • Is there ever any justification for not being honest with someone that is dying about the fact that they are dying?
  • How would you explain to a young child that a person they know has died?
  • What song would you want played at your funeral?
  • What would you want your headstone to say?
  • Thinking about yourself when the times comes where do you think would be the best place to die? Home/Hospital/Hospice/Nursing Home/ Somewhere else?
  • When the time comes for your death what do you think would be the most important thing for your end of life care?
  • Do you have any written plan for your own end of life care, financial wishes or a written plan for your funeral?
  • If you were to become unwell and/or die tomorrow are your family/loved ones aware of your wishes with regards to end of life care and organ donation?
  • Do you think about your death often? Do you talk about it often?

"Putting Down the Spoon" with Vicki Barry

 

Vicki is a self confessed "end-trepreneur" with a passion for educating people about their choices and rights with the hope that we all get the best ending in life possible. Here's some of her incredible story. Enjoy.

Over the years I have become increasingly concerned about the medicalization of the dying process, the unrealistic expectations of treatment to prolong life, and the reluctance of healthcare professionals and families to engage in meaningful end of life conversations. I'm also disenfranchised with the funeral industry here in WA which seems intent on maintaining business and death care practices as usual at costs exceeding the national average.

I faced the prospect of my own death at 17 as the result of a car accident where I sustained burns to 17% of my body. My dad was admitted to hospital a few days later and diagnosed with cancer. We spent his last Christmas in hospital together. He died a year later on the anniversary of my accident. That same year, the friend who rescued me from the car only seconds before it exploded was killed in a motorbike accident. These collective experiences of death and loss were profound, especially at this stage in my life. It made me realise just how precious life is.

My advice would be to contemplate your own death while you are well. If you get the opportunity to be with someone who is dying take it. Don't be afraid. Also, be reminded that each time you suffer a loss, whether your job, a friendship, a pet, moving house, divorce, whatever... these are all deaths, and yet life goes on. One door close and another one opens. One life ends and another one begins. That is life.

Recently I had the privilege of actively participating in the washing and shrouding of the body of a deceased Muslim woman. The Islamic funeral practice is as natural as it gets. The custom and rituals of the process are simple, respectful and well directed so that even the uninitiated like myself can undertake the assigned tasks with ease. I was amazed at how quickly the shroud was 'ripped' to measure and the seven cotton pieces laid out in readiness for the washed and dried body. An absolute delight to witness and partake in the process from start to finish.

I'm passionate about bringing death and dying back to community so we are more involved in caring for our loved ones at end of life. There is a beautiful expression, "putting down the spoon", which in times past signalled to family and community that one was at the end of life. Feeding would cease, funeral plans would begin, and people would visit to say their goodbyes and pay their last respects to give closure. Death and mourning were very visible in the community.

 

“What's the point of talking about death or planning for death?

 "What's the point of talking about or planning for death? 

- I’d rather focus on life."

In the same way that the map of Australia isn’t complete without Tasmania, the ‘circle of life’ is incomplete without death.

Death is considered by many as too sad, too scary, too unfamiliar and therefore too difficult to discuss. Most people choose not to go there. They ignore death and dying until it slaps them in the face, until it’s too late to prepare. Avoiding death only puts off the inevitable and leaves little time to be ready for what’s ahead.

Preferring to focus only on ‘life’ in an effort to somehow keep death at bay, is a half-baked approach. Death is part of our lives whether we like it or not. Not talking about death is a missed opportunity and many are compromised at the end of life, because they chose not keep quiet.

·       Over 70% of us die in hospital though most of us would prefer to die at home  

·       Very few of us outline our plans for treatment and care at the end of our lives and almost half of us die without a will. (ref PCA 2013)

·       Seventy five percent of people have not had end of life discussions yet sixty percent think we don’t talk about death enough.

Last month Prince Harry publicly noted his regret that only talked about the death of his mother a few years ago, sixteen years after the event. 

John Troyer, Deputy Director, Centre for Death and Society at the University of Bath suggests that “what most people need is a reason or a little bit of encouragement to know that it is not weird or macabre to have these discussions” about death.

What’s the point of talking about death?

Talking about death makes us focus on life. This article suggests that fear of dying “stimulates us to cherish those we love, create enduring memories, pursue our hopes and dreams and achieve our potential”.

We’re all going to die one day. Guaranteed. So let’s not be surprised about death any longer. Let’s dive into deliberate discussions about dying. Sure it might be uncomfortable, but what would you prefer?

·       Feeling a bit awkward with someone you love, or living with regret because you didn’t tell them what they meant to you?

·       Ending up on life support after 85 fulfilling years, or dying at home, with your family and dog by your side?

·       Taking one last course of treatment or one last visit to your favourite beach house?

·       Capturing your grandma’s stories of her childhood or wondering what she was like as a young woman.

·       Stressing at the thought of organising your father’s funeral, or confidently putting his plans into place?

7 reasons why we should talk about death

Talking can be tough, but silence can be rough.

It takes courage to talk about death, especially if you’re entering unfamiliar territory. As Brene Brown says, “you can’t get to courage without walking through vulnerability”. It’s only human to feel vulnerable, yet the more we practice talking about death, the more courageous and comfortable and normal it becomes. Talking about dying opens up conversations an insights that we may never have imagined.

Talking about death:

1. Breaks down the barriers that keep our thoughts and fears inside our heads and hearts. Sharing helps us deal with them.

2. Builds bridges that strengthen connections with the people we care about. It helps us  understand what others are thinking. It’s better than making assumptions.

3. Switches on lightbulbs. Talking offers new insights, new information, more to consider. It helps us make sense of our thoughts and actions when we confront the end of life. New perspectives create greater opportunities.

4. Generates curiosity. Asking questions about dying and seeking answers that clarify confusion and fear creating more open, death-accepting societies. 

5. Dampens our fears. Tossing around the reasons we’re scared can help us make sense of our feelings. Most of us fear something about death. Talking about it helps each other deal with it. Professionals can assist when times are really difficult.

6. Helps clear the fog. Conversations can reduce the ‘overwhelm’ associated with dying and death. Asking questions and giving explanations clarifies concerns and helps create greater calm and acceptance.

7. Reminds us that we’re mortal. It gives living an edge by sharpening our focus on making the most of the precious time we have. 

7 reasons why we should plan for death

Being thrust into dying without preparation means people will die in ways they don’t choose and families will flounder in times of great sadness. Making and discussing plans now sets up a smoother path for later.

Planning for death:

1. Maps our preferences for treatment and care at the end stage of life and lifts the weight of responsibility from your loved ones. Making life and death decisions is incredibly difficult for family members during an emotional crisis.

2. Creates fitting farewells. Planning a funeral well before death gives a personal touch to a memorable event.

3. Makes long lasting memories. Sharing thoughts, lessons, stories and recollections leaves lasting treasured memories of and for the people you love.

4. Diminishes regret. Discussions allow us to say and do what matters, with the people we love, before it’s too late.

5. Avoids financial and legal complications. Dying without a will creates dilemmas and often divides grieving families.

6. Offers peace of mind. Discussing your wishes with the people you love increases the chance that they’ll be honoured and respected.

7. Allows for legacy. A handwritten letter, a favourite plant, the smell of your perfume, a gift or memento, a song or a poem, a bequest to a cause – these personal gifts keep your memory alive in the minds and hearts the people who matter.

In their song, ‘Do you realise?’ The Flaming Lips remind us that we, and everyone we know, some day, will die. Sometimes it take a song to remind us that we’re mortal.

So what are you waiting for? A true focus on life includes a focus on death.

Tell the people you love how your feel, make some plans for your future, make friends with death. Get to know it, question it, understand it and open up to death a little more.

Talking about death is good for us. It inspires us to shine a light on life.

 

***

Julie Hassard is a speaker, facilitator, mentor, author and consultant, determined to demystify death and inspire people to ‘Do Dying Better’.

Her talks and programs guide individuals, families and health care personnel to explore and make sense of the end of life, so they can make plans for the best experiences of dying and death possible.

Find our more: julie@juliehassard.com

Dying to Know Day - Musings from Home by Gypsy Artemis

Dying to Know Day - Musings from Home by Gypsy Artemis

This time last year, as some of you may recall, I was writing my Dying to Know Day piece called “Musings from the Road”.....the "road" being the long road from the East Coast to Broome! A year on, so much has changed. For starters, I am writing from my home in Ettalong, with the blustery Winter winds and rain swirling about outside, with not a grain of Central Australian red earth in sight unfortunately!

#D2KDay in a hospital setting... how to make the most of it

#D2KDay in a hospital setting... how to make the most of it

Dying To Know Day 2015 was bigger than ever thanks to many passionate people across Australia. In this account, written by Arlene Roache, LHD Palliative Care Volunteer Coordinator and Janeane Harlum, Area Palliative Care Manager for South Western Sydney, we hear about how the area health service designed and implemented a series of events for their staff and community.