Walking into their house I noticed a hive of activity. There were two painters quietly chatting amongst themselves as they attempted to change the wall colour from dark grey to white. There was also an electrician installing new light fittings, quite modern and expensive by the looks of it. We sat down at the wooden kitchen bench and I was offered a tea or coffee by a heavily pregnant and friendly woman. I declined. As nursing staff we were instructed not to accept any food or drinks from our cases. The man sitting beside her was lean, looked very healthy and in good spirits. The only noticeable indication that he was terminally ill was the swelling in his face from the fluid retention caused by the steroids.
I was surprised they had agreed to see me so early after his diagnosis as it’s usually later in the palliative care stage that we meet with the families. I loved my job and felt in an honour to work with people so closely at the end of their life. The questions were immensely difficult to ask but also elucidated heart warming personal stories which were a privilege to share. I thanked them for seeing me and asked a little about the diagnosis. The palliative care counsellor had already provided me with all of the medical documentation but I always like to hear it from the family and build trust prior to asking those difficult questions.
My main concern was the wife and how she’d cope looking after her husband and a newborn. As a mother to three boys I knew the challenges of the sleepless nights and regular feeds and changes, add to this caring full time for someone you just married with terminal cancer and her work was cut out for her. They were due to give birth to their first child in 3 weeks, such a blessing and wonderful to focus on in this challenging time of their lives. It reminded me how cruel this disease was and could hit at any time destroying lives but also re-focussing our energy on living the best possible life we had left.
The forms we had to complete were official government documents. I explained as simply as possible that advance care planning is about your future health care. It gives you the opportunity to plan for what you would want or not want, if you become unable to make or communicate your own preferences. Often I found that my clients didn’t really understand the purpose of my visit. The wife interrupted asking, “Why wouldn’t he be able to communicate?” Then I think the realisation dawned on her that there would be a stage that he would stop functioning rationally. I paused and said, “It’s for the later stages… That’s why I’m here now to understand and document your wishes.” They’d only met with the neurosurgeon last week and I’m sure the news was still sinking in. They’d decided not to hear his prognosis according to my report with a note saying not to mention life expectancy as they husband especially did not want to know.
Part one was straight-forward as I confirmed the personal questions, name, date of birth, address, phone number. Followed by what the current major health problems were. I mentioned I would complete these details in the form later as I had all of that information as to not hold them up. Often was the case if family members had to complete the form themselves it became too hard and they’d give up halfway. My job was to ensure it was completed then signed and registered.
Part two focussed on a values. They had to identify who the medical treatment decision maker was and discuss their preferences and values with them. He agreed that should be his wife. I noticed he hadn’t let go of her hand this entire time and voicing this answer he held her closer. They had a strong bond and I felt she would be OK. The hard questions followed:
- What matters most in your life: (What does living well mean to you? What worries you most about your future?)
- What are unacceptable outcomes of medical treatment after the illness? (For example, loss of independence, high-level care or not being able to recognise people or communicate)
- When you are nearing death what things are important to you?
- Are you willing to be considered for organ and tissue donation?
I hesitated after asking that last question as his organs would not be considered for donation.
The final few questions were always difficult. I asked if they needed a break suggesting perhaps they’d like a cup of tea. The wife insisted they continue and get it done quickly. I felt her urgency and followed with the instructional directive explaining it was legally binding and communicated their medical treatment decisions directly to their health practitioners. I didn’t mention that often palliative care units in hospitals had their own rules which were against these instructional directives. One which often bothered me was the hospitals mandate to stop feeding patients once they’d become unconscious. I understood why they did this as the patient would die quicker without food, but often families didn’t have that information when they admitted their loved one.
My final question was to ask for details about the circumstances in which they would refuse treatment. This was always a difficult one and they seemed confused unable to answer. Perhaps it was that they were unable to visualise the situation. As the wife was nominated the medical power of attorney I asked her if she would refuse food for her husband when his lips began bleeding. Upon finishing that sentence I noticed her shudder and grip her husband’s hand tightly with the other protectively touching her stomach. She excused herself and went to the bathroom momentarily returning with tears in her eyes. “I hadn’t thought of that”, she said.