Partners in planning
Karen Detering is a Physician and Medical Director of Advance Care Planning Australia. She has seen many families work through the advance care planning process, and her offers an insight into how advance care planning can be facilitated not only by a person's specialist, but also their GP.
Simon* was in his 60s and had chronic obstructive pulmonary disease, an irreversible disease of the lungs that worsen over time and eventually leads to acute and life-threatening illness. Simon's health was steadily declining. He was admitted to the hospital with an acute illness, and Karen, who was working at the hospital as a respiratory physician, explains that the treating staff helped to manage his acute problem and also identified that he had quite sever underlying disease. She talked to Simon about his disease and briefly introduced the subject of advance care planning.
With his treatment complete, Simon was discharged from Hospital, and his ongoing care was managed by his GP, with whom he had a good relationship. About three months later, with his health weakening, he was again admitted, and Karen treated him again. They spoke again about advance care planning.
'This time, he engaged with the idea more and his son, who was 18 years old, agreed to become his substitute decision-maker.
Karen comments admiringly on the maturity of Simon's son, who, a couple of times during the discussion, deflected Simon's concerns about the family and said to his father, "This is about you, dad."
"He'd been the main carer of his dad for quite some time and I think he knew how sick his father actually was. Maybe more so than his siblings," Karen says.
"We were able to talk a little but more about Simon's prognosis, which he was coming to terms with, and also a little but more about what he wanted in terms of treatment. We agreed that we would continue the discussion but that he would also talk to his GP about it.
"So I contacted his GP with Simon's consent. Simon talked to his GP and started writing down some of his thoughts and views, but not in a formal way at that stage.
Within a few months, Simon was very unwell and he returned to hospital. By this time, Simon and his son were well prepared to put together a detailed Advance Care Plan outlining his preferences for treatment.
"Simon could see that he was quite clearly deteriorating, that he was getting towards the end of his life. He completed the advance care planning documents. He was able to write down in some detail what treatment he wouldn't want."
Simon was clear that as his health worsened he would want limited life-prolonging treatment but not overly aggressive treatment.
"When he came back to hospital this time, he had some non-invasive treatment, which was what he wanted. He improved for a while. However, he subsequently deteriorated again about a week into the admission.
"When he did deteriorate again we didn't step up treatment instead we provided palliative care." This was in accord with Simon's Advance Care Plan, in which he outlined that he would not want further treatment.
Karen tells this story as an example of how two doctors, over several conversations, can help someone to think through the issues involved in advance care planning. It also shows that advance care planning is ideally part of ongoing routine health care. Karen talked about advance care planning when Simon was in hospital, and his GP continue the discussion with him out in the community.
"General practitioners often have quite significant relationships with their patients. They are seen as very trustworthy people in the community. They have a very valuable role in advance care planning."
When Simon was first offered advance care planning he didn't want to be involved. Subsequently, Simon went from knowing very little about the issues involved in his illness and end-of-life treatment discussions to, over six months of learning from his doctors and experiencing health care in the hospital, developing a detailed Advance Care Plan that ensured his preferences were met at the end of his life.
*Name has been changed.