JANE HANNAH, a heart failure nurse specialist, says some families expect her to arrive in 'black robes and carrying a sickle' when referred for an 'end of life' discussion. But she says anxiety falls and patients are more satisfied with their care after having a 'conversation that counts
I guess my first introduction to Advance Care Planning (ACP) was in the early 1990s when my grandmother was admitted to Palmerston North Hospital with abdominal pain.
After a raft of scans and tests, the registrar came to talk to her about the likelihood that the abdominal pain was from a tumour in the bowel. The doctor told her that they would like to take her to theatre to remove the tumour and spoke of her post-op period of recovery.
My grandmother politely thanked the doctor for the information and then replied: "Oh I don’t think so. I’m 80 years old and have had a full and wonderful life. I don’t want to have an operation. If this is going to kill me, then I am fine with that."
What an inspirational woman – she felt empowered and confident enough to make her own choices and advocate for herself. But how many of our patients don’t feel confident to speak up and tell us what they want in regards to their healthcare? And how many times do we not hear the cues or miss the opportunities to discuss patient’s wishes? How many times do we forget to ask?
Advance care planning (ACP) is a process of discussion and shared planning for future healthcare involving the individual, whānau and healthcare professionals. It gives people the opportunity to develop and express their preferences for future care based on their values, beliefs, hopes and goals; their understanding of their current and future health and what treatment and care options are available.
ACP isn’t about a tick box or completing another form – it’s about being open and listening for the cues our patients give us and then documenting those conversations so everyone knows our patients’ wishes. It’s about being brave and having those ‘difficult conversations,’ but best of all it’s about listening and empowering patients.
The training has taught me some invaluable communication tools that I use in my personal as well as professional life. I have learnt that if you talk less, your patients will tell you more. I have learnt how to actively listen and acknowledge what I am hearing. Best of all I have learnt not to be afraid of having those really important ‘conversations that count’.
Some critics believe that when we have these ‘difficult conversations’ we are destroying patients hope. But the literature challenges this. In a randomised controlled trial of older adults, Detering et al, (2010) found that patients who were given the opportunity to talk and express their wishes about their end of life care, lived slightly longer than those in the control group. They also had significantly less anxiety and depression and greater satisfaction with their care.
Recently I was referred a lady who had end stage cardiac disease and multiple other comorbidities. She had more frequent admissions to Cardiology with chest pain. Her discharge papers quoted ‘referral made to Heart Failure Nurse Specialist for Advance Care Planning and end of life discussion.’
When I arrived at her residence, the family was naturally highly anxious. They expected me to arrive in black robes and carrying a sickle! I explained that my role was to help keep her well and to find out what was important to her. We discussed ways of managing her chest pain and talked about the future and the choices she had. I wasn’t coming to tell her, her ‘time had come.’
For me, ACP involves painting a picture of what the future might hold, helping people to understand what is happening to them, what might happen and to develop their preferences. Most of all it involves clinicians being brave, being open, and really listening to our patients.