Life | Culture

Does Your Loved One Genuinely Want To Go Into Hospice?

It’s not a choice that any of us wants to have to make, how do you know what is going to be right

My late husband gave a lot of thought to going to hospice but not because he wanted to, but because he was of the view it would be better for me.

This piece is in response to Spyder’s KTHT prompt, “What do you see as your role in helping a loved one who has decided to enter hospice?”

My Husband and Hospice

Let me explain, at the time, we were in our mid-twenties, with a two-month-old baby. He had stage 4 cancer from the bowel, which had spread everywhere.

He was justifiably worried about how I would nurse him and care for a baby as well. He was probably right to be concerned.

That was the type of person he was. Till the end he would put me and the baby first, trying to do what he thought would be best for us.

Against these odds, we kept him home with a lot of support from healthcare teams. And family.

It wasn’t easy.

But practically it was better.

I didn’t have to worry about traveling to visit him and who would mind the baby when I did?

Or if the baby would disturb others when visiting at the hospice.

I could still care for our baby, and spend time sitting at his bedside, nursing her whilst holding his hand, as often as we could.

I knew that deep down he didn’t actually want to go to a hospice. He wanted to be home but felt he would be a burden to us in doing so.

I have nothing against hospice care.

But I refused to allow him to go into hospice because he wasn’t going for himself.

My Sister and Hospice

In 2012, when my younger sister was terminally ill with Cholangiocarcinoma (Bile Duct cancer), she also wanted to be home till the end.

The hospice was very involved and supported her decision. However, the option to enter hospice at any stage was always there.

The hospice provided all the kit we needed to help her remain at home. They wheeled the hospital bed which took center stage in the home. As her body began to deteriorate, hospice nursing visits became more frequent.

My sister didn’t want to go to hospice, but she would have if this would have lessened the burden for her family.

Her choice would ultimately not have been for her, it would have been for her family.

We didn’t allow her to go because this was not what she wanted deep down for herself.

My Dad and Hospice

When caring for my dad when he had oesophageal cancer, he was open to hospice care, more so when it was coming to the end. But by then it was too late.

He was too ill to make the move which could have been too much for his body to manage. We were advised that there was a risk that he could die en route, which was a burden we could not have carried.

We kept dad at home, with the support of hospice visiting us daily. They trundled in the hospital bed, walking frame, and carers to support his care. Hospice was on hand for our many telephone calls at 4 am when we simply did not know what to do.

Dad was only agreeing to go to hospice care as he felt it would be too much for my sister and me to cope with his care at home. He did not want to be a burden.

I know that deep down he did not truly want to go there.

And neither did we.

Should You Allow Your Loved One To Go Into Hospice Care?

If any of my family members had undoubtedly wanted to go to hospice, based on the benefit to themselves or that they would feel more comfortable being there, I would have supported them in this decision.

All my family members when approached about hospice, only considered going there because they thought this would be easier for the rest of the family. That they would be less of a burden. Rather than because this was what they genuinely wanted for themselves.

It is not easy to care for or watch a loved one at this time of life, and that is when hospice care can come into its own. If you need to help a family member or friend, make such a decision, a guiding factor will be whether there is a strong support system around them. Hospice can still be part of that system without needing to enter it physically.

At the end of the day, it is a choice that only the person dying can make but they will need the strength of their family and a healthcare team, and this will influence the decision-making.

Watching family members at the end of life has made me reflect, that if I have a choice, I would choose to remain at home, in my own space. But not all of us will have this choice, and not all families will be able to cope till the end, that is when hospice might be the right choice.

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