Module 4: Supporting families and friends

4.2 Fears about CANH-withdrawal

Families usually fear that the death will be difficult. Some people had been told by healthcare staff that discontinuing Clinically Assisted Nutrition and Hydration would lead to a distressing and painful death. Staff had sometimes suggested that stopping CANH means “abandoning” the patient. It is vital that families and friends have the opportunity to meet with the palliative care team in advance to ask questions and to address any concerns or misinformation.

Questions for you as you listen to a patient’s brother talk about his feelings and concerns
  • Watch the clip below from an interview with a brother just prior to his sister being moved to a hospice. As you listen, ask yourself: What were his concerns about end-of-life care?
  • How did meeting the hospice team help?

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Jenny Kitzinger: “In terms of the process of the feeding tube being withdrawn, do you feel you have enough information about that?”

Interviewee: “I do now, and I’ll be honest with you, when I got told about the process of how it would work I was horrified. I thought ‘it’s basically starvation’, […] I thought that was a bit medieval, macabre. Why don’t they just give her an injection? But I was ill-informed about it. I couldn’t really search anywhere that would tell me how it would be.  It’s one of those taboo subjects really. I thought it was bit of a barbaric process, but understanding what actually happens, and who’s there caring, and where she’s going to be, I feel quite comfortable now.”

JK: “Have you met with the palliative care team?”

Interviewee: “I have […] and they were lovely, they really were nice people. They came up and met my sister. They talked to her, they held her hand, they showed a lot of caring. Which I suppose in that profession it’s huge. But they were lovely and they put a lot of my fears at rest – that all through this process that it was going to be dignified.”​