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Nick Hoschke lives in NSW, and has a keen interest in writing. Nick has provided insight into the challenges and importance of end of life discussions, decisions and care to help others when facing this difficult time (December, 2020). He shares his journey and considerations after losing two of his brothers at different times of his life. This content may cause distress to some readers.

What is your experience or what thoughts have you had around end of life care? 

I lost one of my brothers in the late 90s, when he was 24. Another brother passed at age 28 in the mid-2000s. Both had CF.

There is no way to get around the fact that if you are a mum or a dad and you lose offspring, it will be pretty devastating. Or if you’re a sibling. Everyone responds and copes differently though.

There is a loss of control. Anything that can be chosen or controlled by the person at the end of their life should ideally be acknowledged, discussed and facilitated where possible. It’s the lack of control that ruins people, and is the hardest thing to deal with.

As a family member and a person living with CF, what can you reflect on that is based on your lived experience with your family, and what supports if any were helpful or not helpful?

When you lose someone you don’t exactly move on, rather you adapt. Any family will struggle with the loss and coping will be challenging. It’s hard to talk about things like this. It’s good to get some sort of conversation going. I believe people don’t talk about death enough. It seems taboo, understandably perhaps but arguably to the detriment of society. It can affect areas such as aged care and mental health, as well as interpersonal relationships and families, especially in the case of having a loved one with a chronic illness, a life threatening illness.

Each of my brothers died in different circumstances. The first one to pass away did not qualify for a transplant, and at any rate said he didn’t wish to have one. He’d had complications. He and I had talked about death in the last year or so of his life, although this wasn’t really a conversation shared so much by other family members. He had been in hospital and had some sort of resurgence in health very briefly only weeks before his passing, and died at home during the week of Christmas. Looking back at this period is bittersweet because he had been with us, his family, at home, and I believe we tried to make his passing as comfortable as possible. And upon reflection I think we succeeded.

A few years later my other younger brother had a lung transplant. This was successful and he lived a further three years. He made the most of his time, socialising a lot, spending as much time as possible with friends and family. I think this later allowed us to be somewhat philosophical about his life, having been given a second chance — even though it was short he really made the most of that time in a way he hadn’t been able to pre-transplant.

The flip side to his end of life story is that he died in hospital, in an ICU after serious bowel complications. This was certainly a traumatising period for our family.

CF affects everyone differently, it influences how they experience the world and yet it does not define them. You don’t remember the illness, you remember the person, you remember who they were.

Was there something you needed that you did not know how to access?

Unfortunately, 22 years ago, there were limited to no support services around death and dying – at least not that our family was aware of – the whole process seemed very medicalised. This had improved five years later and I believe continues to improve today.

What could be helpful to families?

Strong family communication is pretty essential. This wasn’t exactly a strong point in our family in some ways. People tried to communicate their pain and thoughts the best they could, yet there was often a silent inability to say anything. People and families who practice good communication in more normal times will rely on it to help them get through in terrible times.

Allow the person to say whatever it is they might want to say. After all, they will want to express important things, and at some point, they will probably talk about acceptance of the situation. As difficult as it may be to hear such things, it is what makes peace of mind possible for them and potentially others. It can be difficult to truly listen to the person who is approaching death. Feelings of denial can be a real obstacle, as well as fear, anger or despair. Yet listening is probably the best thing anyone can do.

Support groups for family members can be very helpful, especially meeting people who’ve had similar experiences and hearing their stories. Support groups for people in bereavement are particularly important and we are fortunate in this generation to have a good chance of finding one. It is likely that a social worker from the hospital or CF Association can help locate such groups, as well as other supports. Even other more practical community supports, such as Meals On Wheels, can help people experiencing difficult times.

Good friendship support is important too. It’s something of a cliche that friends abandon people when something goes badly wrong or a person gets bedridden or becomes terminal. However, I don’t think most people do this – most friends will stick by you and check in and do what they can. Sometimes, this will feel tragically inadequate to them, and that’s perhaps understandable. The powerlessness of the situation affects everybody.

What would you tell someone who is going through a similar experience?

People respond to situations differently and this shouldn’t be underestimated. Some people will go back to work and others will need to take time off. People grieve in many ways.

Be on the lookout for issues that may require assistance from health professionals, for yourself or other family members. Familiarise yourself with the signs of mental illness such as depression or anxiety. This is very important. These symptoms are likely to occur, albeit temporarily. There is no shame in acknowledging stress-related mental illness.

Generally, rather than telling someone something, it’s always good to listen. Just be there in whatever way they need.  You usually can’t go wrong with listening.

Are there any key learnings or information you’d like to pass on? 

There is a lot of information out there, some of it on the internet. I receive a newsletter that has links to different resources, such as support groups, mental health organisations and articles. This gives me hope that there is a lot out there anyone can find. However, it’s a really good idea to check in with a social worker or a GP, as they can help a lot by pointing people in a good direction at a time when it’s hard to focus on anything or think clearly.

What would you recommend to help support family members or spouses?

It may seem tangential, but a Mental Health First Aid course is something I would recommend, for reasons touched on earlier.

What are some really important things to consider for advance care planning?

This can be quite confronting, I suspect.

I struggle to talk about wills or anything like that. Regarding medical wishes, such as what to choose should you ever become comatose or experience brain injury and become less able to make one’s own choices – these are difficult topics. Again, they’re important, especially for people with chronic illnesses and their families.

There was a policy used by Hobart Hospital some years ago that brought this topic front and centre for long-term patients. They were encouraged and supported to have the discussions with their families, make decisions and sign a document to make this viable. I’m unaware of current policies there or in other hospitals, however, once again I think social workers and doctors may be able to assist.

How would you explain palliative care to someone who may not know? 

Unfortunately, I don’t know a lot about palliative care, outside of some vague ideas already acknowledged. It’s something I intend to educate myself about. People who work in that area must have a difficult job. Perhaps they are unsung heroes. Maybe more public consciousness on this would be a good thing.

Everyone has a story, a life story. Insofar as it’s achievable, all involved can contribute to making the end of someone’s story as good as it can possibly be.

If you would like to share your story, please contact us at admin@cfcc.org.au. We’d love to hear from you and so would our readers.

This story was published in December 2020.