Reflection: one journey, two deaths, multiple perspectives

‘August 16^th 2004, 11-year-old me rolls over in bed to look at the time. It’s after 7:30am, slightly annoyed I remember wondering ‘why hasn’t anyone woken me up?’. I opened the curtains to look outside and there is snow everywhere, ‘yus, it must be a snow day off school’. I meandered out to the kitchen and saw an ambulance in the driveway. ‘That’s odd’ I thought … the next little while is a bit of a blur. Our neighbour (who later became my foster dad) took me and my two brothers aside. He knelt to our height, tears in his eyes and informed us that dad had died. Moments later the ambulance officer asks if I want to see my dad, stating ‘he isn’t on the floor anymore, we got him back into bed’. I’ll always remember the way they said that and how confused it made me feel. We went upstairs to see dad. He looked asleep but I remember he was so cold…. I just wanted him to be warm again.

Skip forward a few months to April 2005. Mum informs us that she needs an operation to remove melanoma from her lung. I remember overhearing someone say they would ‘try not to break her ribs’. I was worried for mum and what they would do to her. She was told she would need at least 6 weeks rest, but this wouldn’t stop mum … she had a marathon to run in six weeks (which of course she did!). Moving through to September, mum pulls me and my older brothers (age 12 and 16) aside to tell us her cancer isn’t curable. She did not know how long she had left but it was ‘enough time to get things sorted’ for us kids and thought to be at least 6 months.

We tried to live life normally but come December things got hard for mum. Our neighbour (who became our foster mum) moved in, to nurse mum. Things deteriorated quite quickly though, and the cancer had spread everywhere including to her brain. I will always remember her GP coming out on Christmas day to make her comfortable. She then passed away a few days later on the 29^th. She had fought hard for us kids but I think she was ready to go.

As hard as it is for a child to lose their parents, it’s even more difficult to imagine what it must be like for a parent to lose their child. It at least felt right that mum’s parents were by her side as she took her last breath.’

Recently, I was doing some reading around the topic of death and dying for postgraduate university study.^1,2 I had a realisation – as doctors, we are taught to acknowledge that each person’s journey through end-of-life is unique. But do we ever consider that during one, or even two, patients’ journeys each of their family members (whānau) will have different experiences and perspectives of that person’s death? We might consider it when their perspectives clash, but what about when everything on the surface seems straightforward? This inspired me to think about my own parents’ deaths and our family views. Although my family talk about the great memories of my parents, we do not really talk about our own feelings or experiences of their deaths. So, I asked them to respond to some tough questions. I have then combined their responses with my own reflections into a few key themes and hopefully some lessons for doctors to think about when involved with death and dying.

I have reflected a lot over the years on the deaths of my own parents and how I reacted to them. I have definitely felt sad at times but continued to try live my life fully, for their sake and mine. Many of my family members also commented how mum and dad’s deaths have made them value life more. I know, however, that I have also felt bitter at times and wondered why things appeared so unfair. I have thought about the ‘what if’s’. I do not consciously remember proceeding through each of the famed five stages of grief but I am sure it happened.³

One common theme throughout my own and each of my family members’ depictions of death was how much it ‘hurts’. It’s not a pain that can really be described. One family member wrote about feeling ‘numb’ and another just ‘hurting so badly’. It is something very deep, which at times feels unrelenting, but does eventually ease. It is always there, but it becomes more manageable with time. A quote that really resonated is ‘Time doesn’t heal. Time just gives us the strength to carry on’.⁴

I know growing up I also got frustrated and felt hurt when people said things like ‘I’m sorry’. All I could think was ‘it wasn’t their fault, so why are they apologising?!’. I also felt hurt by people asking in passing ‘how are you’, with clearly no intention to take time to listen to my answer. I would usually respond with a short non-descript response so as to not upset them. Even now on many hard days, I will still frequently put on a happy facade in public to stop people from asking insincere questions. It is important for doctors to recognise this sort of response and take time to listen. Help people to realise they do not always have to pretend it is all sunshine and roses. For a lack of a more eloquent way of saying it – sometimes it is just ‘sh*t’. I have very carefully said this to the odd patient and find this a great way of developing rapport and encouraging openness.

As doctors, I think we can share some of these insights with our patients. Reassure them that it is okay to feel hurt, and although that hurt may always be there, with time (and possibly some outside help), they will gather strength to go on. As health-care providers, we must also remember that it is some of the little things we do that count. Choosing our words carefully, taking time to listen to stories, be open and sincere. Sit down and just ‘be’ with them. Holding someone’s hand, telling them that it is okay. Sharing words of hope and reassurance.

We can probably all think of some examples of a ‘good’ or ‘bad’ death, but it can be hard to put this together into words. Considering the circumstances, I believe both my parents had ‘good deaths’. Words used by my family to describe my parents’ deaths were all in keeping with many of the themes described in the literature around death.⁵ Paraphrasing a prominent physician, one could describe a good death as dying with everything lined up; what we feel, see and do. Accepting and dying without fear and regret.⁶ A key aspect of the literature around a good death though is understanding that doctors, patients and families often give a different value to certain aspects of a good death.^5,6 As doctors, we must balance our own opinions on a good death with those of the patient and their whānau.

If we consider the key themes of a good death and the definition of palliative care, we can see many synonymous aspects.^5,7 Importantly, the definition of palliative care specifies it is about the patient and their family.⁷ Although the patient’s experience of death is our priority, we must remember that in the end, the patient will die and it is the family that keeps on living. One could argue that ensuring the family is supported is as important as caring for the dying patient. When I think of many of my clinical experiences of ‘bad’ deaths, I conclude that the suffering of the family was often more prominent than the suffering for the patient.

Death is inevitable. In fact, it is the only thing in life we can guarantee. As doctors, we are responsible for providing holistic and generalist care through someone’s life and death. Although this can be challenging at times, I truly believe it is also a privilege and honour. We need to learn when to let people die and not prolong things unnecessarily. We must try not to ‘over-medicalise’ the end-of-life period. When the appropriate time comes, we need to prepare ourselves, the patient and their whānau to try and focus on the quality not quantity of one’s life left. We need to facilitate a good death for all involved. I believe the provision of high-quality palliative care by general practitioners (GPs) and other palliative care specialists can ease many tensions that have led to the recent passing of the End of Life Choice Act.⁸

Previously, if someone was to ask me, I’d say I did not have any culture. ‘I’m just a kiwi’ and I am not particularly religious. It has taken me many years to realise that I do actually have my own ‘culture’ and ‘spirituality’. My culture has been shaped by my semi-rural upbringing, valuing the community and the people around you, treating others the way you want to be treated, being able to laugh and find humour during difficult times. Although I am not Māori, my spirituality is built on whanaungatanga (connections) – to whenua (land), people and the world around me. Although different entities, cultures and spirituality are inherently linked, our own beliefs will influence how we care for patients. Sometimes sharing a little part of ourselves with patients and whānau allows a connection and to feel human.

Often in medicine, we do not really have a chance to think about someone’s culture until they are dying. Many hospitals have a standardised admission template, with a question such as ‘do you have any cultural requirements that we should be aware of’? How can we expect to get an accurate answer when it is asked insincerely, often among yes/no questions like do you have false teeth or wear glasses? However, when things slow down and we take time with our patients, we can open a dialogue about culture and to find out what is really important to our patients and their whānau, and what might be disrespectful. It is something that is not a single question; rather, it develops over time based on what people say, do and feel.

A few parting comments. Death is an inevitable part of both our professional and personal lives. We must remember our vocation is primarily aimed to care and relieve the suffering of people. Sometimes though, our medicine is just to be a person, to listen and be ‘human’. We should not ever underestimate the value of the therapeutic alliance.⁹ How just being there and listening is a medicine in itself. We must also remember that as doctors, we are also people and sometimes we will need help too and we also need to ensure we take time for ourselves, to reflect, spend time with our own whānau and consider outside sources of help.

The authors have no conflicts of interest to declare.

No funding was received for this viewpoint article.