Advance care planning is about exploring what matters to you when you near the end of your life. This information is shared with your loved ones and your health care team so treatment and care plans can support your wishes – even if you’re too unwell to express them yourself.
It’s an important gift for your loved ones as it can relieve the burden of them having to make decisions on your behalf.
It may be a conversation that you need to start having with your parents, but it is also possible for you to do an advance care plan for yourself now. You may not need it for many years, but you will be glad you did.
For example, what medical treatment would you want if you had a life-threatening illness? Would you want to be kept comfortable with your pain controlled, or for your life to be prolonged with active life-support medical treatments?
A conversation Sheryl had to have
Lower Hutt resident Sheryl Bodda says talking to her parents about their wishes for their advance care plan was not easy at times, but it did open up a discussion about what was important to them.
“Initially I was dreading having this discussion with my parents but once we started it was fine. I shared with them a little of what I would put in my plan and that opened up discussion about what was important to them. There were a few teary moments but I felt it was a relief to them, and certainly to me, that their wishes had been uttered and written down,” Sheryl explains.
Sheryl says the process had given her confidence to know her parents wishes and she wasn’t left guessing them.
“I don’t feel a need to keep asking them questions about what they want to happen, as they progress through their illnesses. I feel if I was to keep asking it would be confusing and upsetting to them,” she adds.
“Everyone has their own feelings about what they would prefer to happen at the end of their life and what is important to them about the care they receive. It is important that families, doctors and care facilities are aware of what a person feels and what they would prefer to happen.”
From her experience, Sheryl has some tips for children wanting to work through an advance care plan with their parents:
- Have a list of suggestions to offer for each question – this opens up discussion rather than putting the person on the spot to come up with something.
- I found it helpful to do the care plan within days of an appointment with the person who will be signing it off (your GP or Older Persons rehab nurse practitioner) – these people will need to discuss it with the person prior to them signing it off, in particular the specific treatment and care preferences section.
- The people signing off my parents care plans knew them very well, so we asked for their advice about what we had noted down in the specific treatment and care preferences part of the form and asked them for information in relation to likely medical problems my parents may experience as their illness progressed. This allowed my parents to make very specific statements about the care they wanted in different medical situations.
- If the persons goes into a rest home ensure they are given a copy for their file; also a copy if a new doctor will taking care of them at this stage.
Take a look at Arthur Te Anini’s video, where he discusses his experience of writing an Advance Care Plan
Legal issues
In addition to an advance care plan, it is also important to look at having your legal documents in order.
Why is it important to have a Will? According to Tom Mahony, Principal Mahony Burrowes Horner Lawyers, people put off making a Will for a variety of reasons but it can be more difficult to sort matters out if someone dies without leaving a Will. In addition to a more complicated process through the High Court, it may not be what the person would have wanted.
What is an Enduring Power of Attorney? In addition to a Will, an Enduring Power of Attorney allows someone to authorise another person to act on their behalf. This may include authorising another person to make decisions on their behalf in terms of their personal care and welfare, including decisions around their medical treatment or admission into a residential care or rest home.
What is an Advance Directive? This is a document which sets out a person’s wishes in the event that they are unable to give instructions personally because, for instance, they are unconscious/in a coma/suffering severe mental illness/terminal illness. It covers instructions such as not providing life-prolonging medication, no artificial life support, non-resuscitation and donation of organs.
“None of us can predict what is around the corner as far as unexpected events are concerned and anyone’s life can change dramatically without warning,” explains Tom.
“We believe everyone over 18 should put a Will and EPAs in place. While you are still mentally capable you should do it now. People tend to think only the elderly are likely to need someone to manage their affairs but anyone can become mentally incapable at any age. An accident can leave you brain damaged, a stroke can leave you mentally and physically disabled, and conditions such as Alzheimer’s or dementia can strike people at a relatively young age.”
For more information on Wills and other documents, have a look at the helpful links below:
