Changi General Hospital Senior Staff Nurse Hasnah bte Abdullah shares the importance of making your final wishes known through a case study.
Contrary to popular perception, Advance Care Planning (ACP) is much more about life than death. It is about helping people live out the final stage of life as fully as possible and to make the most of each remaining moment. In the end, when the time comes, ACP is a means to help people die with dignity in the place and manner of their choice.
ACP discussions include talking about preparation for end-of-life care and death, dealing with unfinished business, avoiding unnecessary prolongation of dying, strengthening of personal relationships, and relieving burdens placed on family. They are a key step towards provision of care that is in line with a person’s wishes, at a time when it matters most.
Let me share this through a memorable meeting with Mr L, who was referred to me in November 2019. Mr L had received bad news of metastatic cancer and limited prognosis from a urologist. He was devastated, at a loss, anxious, angry, and in denial. I was asked to see him as soon as I could.
I went to see him with two other senior nurses who wanted to experience an ACP discussion.
Mr L was initially very angry; he felt that he did not get much time with doctors and had many unanswered questions. Although he was a soft-spoken and respectful man, he got so agitated that we had to calm him down. We assured him that we would help him where we could.
He soon became very appreciative of the time we spent talking to him. He finally felt heard and taken seriously.
As a single 68-year-old man, Mr L’s main concern was not to burden his siblings with his care. I explained that the ACP is an ongoing discussion that can be revisited anytime. At the end of the discussion, referrals were made to a psychiatrist, medical social worker and a private nursing service provider to meet the needs he had described. As a result of the discussion, he also agreed to nominate a Lasting Power of Attorney (LPA) and to draw up a will.
However, he was still very much in denial about his life-limiting illness. After that initial discussion, he subsequently underwent aggressive chemotherapy and many medical interventions. The next time I saw him was one year later. He was admitted and again referred to me. This time, he was much weaker, wheelchair-bound, and appeared to have accepted that further treatment was not going to reverse the course of his disease. It had progressed to a very advanced stage and he was given a prognosis of less than three months. He was seen by the palliative team and referred to Assisi Hospice.
I revisited his ACP with his sister who was the nominated healthcare spokesperson. During that discussion, Mr L made the decision for his preferred place of death to be in a hospice. I guided him and his sister with information about the signs of active dying, what the final hours might be like, and how his sister should take care of herself after her brother’s death. Both Mr L and his sister were very open to hearing this. They were thankful for the information as it prepared them for the end through knowing what to expect.
Relevant information provided at a pace suited to both Mr L and his family meant that he could make decisions that prioritised what was important to him. It might have seemed premature to talk about end-of-life care right at the start of the disease, but it got him to carry out certain important actions early, such as appointing an LPA, before he was not able to do so. The discussions respected his desire not to burden his siblings and facilitated his eventual death in a place of his choice.