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Death can strengthen love and connection: Dr John Endacott

John Endacott believes no-one should die alone, particularly in an institution. Photo courtesy of Backstory News Magazine.

There is a tragic experience that Dr John Endacott and his father both lived through as young children, a generation apart: the death of a parent. Dr Endacott, now a geriatrician, is a firm believer in death offering great opportunities for meaningful connection – which should be celebrated.

Dr Endacott established the End of Life Care Committee at Sunshine Coast Hospital and Health Service. Among its many achievements is the design of a handover bag, which provides a sensitive and respectful option for returning possessions to family after a death. 

What have you learned about death through your family’s experiences?

I’ve certainly got a soft spot for vulnerable people and I’m pretty sure, without being my own armchair psychologist, that it’s tied to the family deaths and early family losses I experienced.

My mother died when I was five years old. About a year afterwards, another boy at my school experienced the death of his mum too.  

I remember the car that brought him through the school yard to the funeral. I remember him looking out the window. And I caught his eye and I just remember thinking that I know that look.

It was a bewildered look. I don’t remember much about the time around my Mum’s death, but I knew that look.

Death is a connector. If you’ve experienced the death of someone close, it connects you to people. And I think that is something that we need to remember and harness a little bit more in society. As bad as it is, and as unhappy as we are when it happens, it connects people and enriches relationships.

As an adult, you experienced the death of your father too. What impact did that have on your relationships?

Dad died 16 years ago. I would love to have him back. But I wouldn’t want to return the impact and changes that his death has had on me; things like the tightness of the bonds that have occurred with my family as a result. We are there for one another in a far greater way than if he was still alive.

My appreciation of him has grown and I now see more of him in me. Even though I grieve that he hasn’t met my son, in a funny sort of way, the father that I am is a result of him dying.

When my son Harry was very young I remember looking at him and thinking ‘I don’t think it would be possible to love anyone as much as I do this boy’. And at that moment I remembered what it was like to be on the receiving end of that love, from my Dad. I realised he must have felt the same way about me. I don’t think that I would have come to that realisation if he was still alive. I don’t think I would have reflected on it that deeply.

Now I see myself interacting with my son in ways my Dad interacted with me. I don’t think I would have observed that either if Dad was still alive. As much as no-one wants to lose people I think you are enriched by it. There is renewal in death.

My Dad was left fatherless when he was six years old. His father died during the Battle of Sundas Strait in WWII. I didn’t have a lot of conversations about that specifically with my Dad. I’ve possibly learned more about his thinking since he died, through my step mother.

As a doctor, have deaths touched you personally?

Professionally, I’ve cared about how people die since I was 18 years old and working in a nursing home as a first-year medical student. One of the residents died in bed, alone, in the middle of the day. I couldn’t believe that someone could die, alone, in a building full of people.

I just assumed there would be a little bit more fanfare; that you would die surrounded by people and that it would, in some way, be a special occasion.

That experience triggered a strong belief that, whenever possible, no-one should die alone, particularly in an institution.

We don’t tend to hear much about geriatricians. What do you do?

It varies. We are trained and specialised in the care of older people. So we typically look after a lot of frail and aged people, who quite often have dementia but also other multiple chronic diseases. We treat them in the context of their wider social and family setting and we lead multidisciplinary teams in achieving that aim.

If you are becoming frailer and older you are by definition starting to become more dependent on your network of people around you and we start to need to pay attention to those networks as well. Quite often they are a combination of paid and non-paid networks; immediate family acting as careers and sometimes the main carer themselves is also frail and aged.

From a geriatrician’s perspective, advance care planning is not just to do with the act of dying. We see the need for assistance with decision making occur a lot earlier than say, an oncologist, because of things like dementia. We see it as also covering things like whether you would prefer to remain living at home or go into residential aged care.

Have you seen instances where someone’s values and wishes could have been misunderstood?

I once had a patient who was developing some early dementia. He was living alone in a dilapidated house in a fairly remote area. He didn’t have an advance care plan and community carers were concerned about his welfare.

I did a bit of digging around in terms of people who knew him to try and find out what sort of a person he was and how he lived his life.

I concluded that he wasn’t taking enormously great care of himself but he was surviving and he was happy. Importantly, he had lived most of his life like this. That was his choice, what he knew and what he wanted.

The alternative would have been to put him into a nursing home, which would have clearly been against his will and made him miserable.

Working that out took a bit of work and not everyone has the time or inclination to do that.

An advance care plan would have presented me with a better understanding of the patient and his wishes, and helped me to get to – what I think and hope was – the right decision, which was to leave him living in his own home for as long as possible.

Are people more likely to plan for the end of life as they get older?

I think people tend to take life as it comes and only address things like end-of-life wishes when they feel they need to. It’s a bit like retirement planning; some people start at 20 and others when they’re sixty-four.

Some families feel the expected death of a 90-year-old every bit as suddenly as they would if the person was a lot younger. You can’t assume that families have prepared for it or talked about it, just because the person they love is frail and elderly.

Only about 5-10% of people have completed an advance care directive, but many more have started planning without realising what they have done or labelling it as such. Rather than documenting specific decisions, and giving specific directives on health care options like being resuscitated, they’re having conversations about their values.

I’m a big supporter of those conversations occurring in households and advance care planning being a process, rather than a single event. Conversations give a depth of understanding to why people have made decisions. When people understand what is important to you, and your values, that can guide the specific decisions they might need to make for you, down the track.

That’s important in times when people are distressed; when no-one is in their right mind and able to think clearly. Those conversations leave family better placed to make decisions when they need to be made.

As health professionals, we need to understand enough about our patients’ stories to help them achieve the ending they want. And we need to adapt care to patients’ expressed wishes. 

Celebration and death are words that don’t often feature in the same sentence. Should they more?

I see potential for us to create a culture where death is celebrated, or at least cherished.

Have you ever come across a wedding held in a public space, like a park or at the beach? Although I keep a respectful distance, I imagine the couple consider passers-by as unofficial guests and I feel kind of privileged to have been part of this social event that the couple will remember for the rest of their lives. 

There is a similar feeling of privilege in bearing witness to the social event of dying – especially if you have the chance to sit with the person and their loved ones in the last few hours or at the time it happens.

Their whole life has literally led to this moment and, for whatever reason, you are there to share it. As sad and has grief-ridden as death is, there is something in that to celebrate (if not to celebrate, at least to cherish), isn’t there?

In that sense, some of the most satisfying clinical experiences I’ve had did not involve saving lives. It was supporting and connecting with dying patients and their families – whether it was a child, a young adult or an older person. For me, that means death is not all about loss and failure (it is inevitable, after all). It can also be enriching and renewing, like the growth I experienced from my Dad’s death.

Death can help to strengthen and sustain love and connection. Everyone has to choose their own path. But I think our society is potentially losing something in not knitting death into the fabric of what we do. And make it every bit as important and as celebrated in some ways as we do births weddings, all those other key moments in our lives. And if we celebrate those things, well surely we should be celebrating the thing that will happen to every single one of us.


Comments

  • Wonderful article and absolutely bang on. Thanks.

    - Heather Lloyd
  • Oh John, weeping as I read this...filled with hope, love, connection and truth...thankyou for being their for our elders, for your loving heart and hands in action in our world. May your inspiration, wisdom and practice be adopted widely for the benefit of all. Thank you.

    - Helen Callanan
  • Dear John - what a shinning light you are in the often soulless health care system. How blessed your patients are to have you see them as a whole person with an amazing story. How lucky are the people who get to work with you - please keep doing what you do and we can all share the message of the meaning of life and death. Kate Munro

    - Kate Munro
  • You might like to know about the Conversation project (based in Boston) which helps people think about end-of-life issues very effectively, Julia (on Facebook with your sister Nicole)

    - Julia Ogilvy
  • Thanks John, as I would have expected humbling, gracious and so genuine. So lovely to hear you have found your niche in life and I am sure your patients and family adore you.

    - Di Dobson
  • Thank-you. What a wonderful article which I have read and re-read, and will print out as an ongoing resource. Such a message of compassionate connection to others at the time of dying, and how loved ones can stay very connected to those who have died. It's a story of comfort and hope for others in often their darkest of times. Death can bring opportunity for connection, reflection and renewal.

    - Julie-Ann Pook
  • I felt exactly like this recently when organising my brother's funeral. I believe the bond between family members was strengthened significantly during the days we spent together leading up to his funeral, the funeral itself and the days following. We are a much stronger family because of it, even though his loss was felt greatly.

    - Tricia Sheahan
  • Thank you so much for this article. I have been honoured over the years in aged care and in my personal life to be with many people as they took their last breath. Each one was different but no less important. Gifts come from within and skills are taught but when the two are combined they become a purpose. Too the people of the palliative care team on the sunshine coast "let your lights continue to shine".

    - Tracey Platt
  • Thanks for writing this all down John. It is a gift to be in the role of witness and to be able to co-create the spaces for these cherished conversations to be held.

    - Moira Deslandes
  • How wonderful you have chosen this path. Remembering you at Caloundra perhaps 10 yrs ago, would never have recognised you appearence wise. Now I have just retired after 54 years at the coalface the introduction of Palliative Care has come none too soon, and when Caloundra got on board it was where I wanted to work. My own health prevented me, but this area of nursing is nothing short of amazing. So rewarding, so much needed, and still after all these years still nowhere near meeting the demand. Many patients do not get the best palliative care, as the beds are not available. Anyway John keep up your wonderful work, I am sure your input to education and actual care of patients will be very valued by everyone in your field of practice.

    - Lin Cox
  • John, your compassion and love shine out in this article. We hope someone like you will be there for us when we need support and understanding. With love Rosie and Roger Redston

    - Rosemary Redston

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