Should a nurse provide palliative care for a relative?
The answer is No. The answer is Yes.
It’s taken me quite a while to formulate my thoughts on this topic.
Four months ago my father in law died after a long 2 year battle with a blood disorder. During those 2 years there were many ups and downs but throughout it all he continued to live his life to the fullest.
For his final few days I was sort of, maybe, his palliative nurse. Like so many I have looked after, in the end, he gave me so much more than I was able to give him.
About a week earlier he’d been hospitalised with a high fever and eventually his kidney function declined to below 10%. It didn’t take long before an infection settled onto his chest which soon turned into pneumonia. The IV antibiotics being given to him were doing nothing to fight the infection. There was very little his doctor could do and they told him that he had “two weeks to live”. He did not want to die in hospital so I offered my services to nurse him at home. He wanted his final days to be where he loved to be. At home looking over the ocean.
This wasn’t a big stretch for me and I was more than happy to do what I could to help. I’ve nursed many people at home palliatively so I knew what to expect and what resources and facilities would be required. With the help of the hospital discharge facilitator we ordered an electric bed complete with a pressure relieving mattress and a commode. We also arranged for a community nursing service to be involved just so there was an independent professional also involved.
His GP was agreeable in providing support and home visits, medication scripts were arranged, an ambulance was booked and we were set to go. This was on the Thursday. As Friday was a public holiday nothing could be finalised until next Monday.
Over that time I did what I could at the hospital without overstepping my boundaries. I helped with eye and mouth cares, kept a watch on his heels, bottom, shoulders, elbows, ears, back of head and any other spots I could think of that might develop into a pressure area. I prompted when necessary for PRN medications to help ease secretions and maintain a pain free body. I answered questions posed to me by my family as honestly and gently as I could.
My self appointed role was to see that he received the best care possible and didn’t get “lost” in the under staffed hospital system.
Months before this and before he became ill his family had arranged for a get together of sorts over the long weekend which would culminate in a grand “ball”. Music had been selected, a mirror ball secured and dance cards arranged. People were coming from far and wide. It promised to be quite an event full of good cheer and laughter.
Circumstances being as they were the original plans had to be altered. My father in law was given day pass for a few hours on the Saturday afternoon. Those who could, dressed in their best and finest ball attire. Each had the opportunity to have time with him and in their own way say goodbye.
On the Sunday my father in law rallied. For a time he became very alert. Jovial and joking. I had seen this many times before and although I did not try to dampen down the optimistic enthusiasm of those present I knew that this was only a short bright interlude.
By the time the Monday morning came around my father in law was very unwell. We had arrived early in order to make final preparations to take him home where the bed had been set up so that he could look at the ocean. He was non commutative and his breathing was slow and irregular. It was clear to me that his time was almost up. To take him home would have been cruel. Sadly I had to tell all his family assembled that I didn’t know if he would survive the ambulance ride home. I didn’t go into great medical detail. They didn’t need to hear what was happening to his body.
The decision was made to stay.
He died later that morning. Peacefully. His wife and daughter holding his hand. A few of his grandchildren had the privilege of being with him also. He never got to see his ocean that one last time but in the end maybe that didn’t matter. Maybe it did. Is location really that important? All efforts were made to accommodate his wishes but sadly, in the end, it didn’t happen. Like I said … He died peacefully.
The most painful thing I have ever had to do in my life was to be the one to let my family know that he was gone. I knew what to do and what had to be checked. No breath sounds. No pulse. No audible heartbeat. I had no words. All I could do was to shake my head. I couldn’t look at anyone. I had to leave the room. At that specific moment I hated being a nurse more than anything in my life. Emotionally I was spent.
For me those few days were both the hardest and most rewarding of my nursing career. It was hard because I knew the process. I knew the journey my father in law was taking. I knew the erratic breathing patterns, the colour changes, the secretions, the noises. I knew what was happening but I didn’t, couldn’t share it with my family. They didn’t need to know those details and I wouldn’t have told them anyway.
It was also the most rewarding experience in that it was intensely personal. The old man I was helping to look after was not just a patient. This was my father in law and he and his family were trusting me for advice and guidance. It is the greatest gift that anyone has ever bestowed upon me.
Would I do it again? Absolutely. Without a second thought and in a nano second. For as emotionally draining and painful as it was, I’ve been blessed \ cursed with the knowledge and skill set to be able to make a difference (as small as it was) as a nurse.
What do you think?
Should a nurse provide palliative care for a relative?