The Perez’s family story is exceptional. It’s a family who talk to each other, including about death. Two of the four sisters are healthcare professionals who are articulate and confident about discussing life-and-death matters.
What about the rest of us who don’t have this background? How could we become more comfortable with having conversations about death and the consequent health policy implications?
South Africa’s legislation doesn’t recognise living wills or “advance directives” as legal documents that doctors have to comply with. This means doctors can trump patients’ end-of-life wishes, even if these are clearly stated in their wills. In the case of the Perez family, that would mean that if “Pa” had included a “do not resuscitate” order in his will, the doctor would not have been legally obliged to follow it.
This goes against section 10 of the Constitution, which is why the Congress of the People (Cope) party, has lodged a notice of intent to introduce a private member’s Bill on advance directives to Parliament.
An advance directive is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves.
The deadline for public comments is August 24.
Many experts doubt that such a Bill will be passed the first time around. But University of Cape Town academic Jacques Rousseau points out, on a blog on his website, that “each time important topics like this are debated, some minds can be changed”.
My research took me to La Crosse, Wisconsin, in the United States, where the Gundersen Health Institute started a “conversation project” known as Respecting Choices. The programme educated patients and families around advanced directives.
As part of this, people discussed end of life care, including questions such as:
- Do you want to be resuscitated if your heart stops?
- Do you want aggressive treatments such as intubation and mechanical ventilation?
- Do you want antibiotics?
- Do you want tube or intravenous feeding if you can’t eat on your own?
Data about the success of the Respecting Choices programme were first published in 1998 in the peer-reviewed journal, Archives of Internal Medicine. The La Crosse advance directive study reviewed medical records and death certificates of 540 adult decedents in La Crosse from March 1995 to April 1996. It found that, at the time of death, 85% of all adults who had died had an advance directive. Almost all the directives (95%) were available in patients’ medical records at the healthcare organisation providing care at the time of their death. And, almost always — in 98% of cases — the patient’s instructions about whether they wanted to be resuscitated or admitted to hospital were followed.
The city achieved this by implementing a three-step programme embedded in the healthcare system. “First Steps” takes place when you turn 18 and have to make your own health decisions. “Next Steps” happens if you have a chronic condition. A terminal diagnosis prompts the “Last Steps” conversation.
The more we know and talk, the more often we choose less invasive medical interventions. In La Crosse’s case, the cost of care in the last two years of the life of someone with a chronic illness between 2003 and 2007 was about 40% lower than the US’s national average, according to an analysis in the Dartmouth Atlas of Healthcare in 2014. This was mostly because of the elimination of unwanted treatment.
By 2008, almost two decades after the Gundersen Health Institute introduced its end-of-life care programme in La Crosse, 96% of adults in the city had completed either an advance directive or a standardised form to communicate their wishes to doctors before their death, a 2010 study in the Journal of the American Geriatrics Society shows.
Overcoming our “death-talk taboo” needs courage and conversational skills, a rethink in the curriculum of many professions.
But physicians often don’t feel equipped to talk to their patients about death. For instance, in 2008, Britain’s national audit office commissioned a survey to establish how ready doctors felt to deal with end-of-life care. Nearly 1 000 general practitioners (GPs) and specialists completed an online questionnaire.
On average, doctors rated their confidence in identifying the point at which end-of-life care should begin as 6.5 out of 10. The group with the lowest average confidence score was GPs, who rated their confidence as six out of 10. And only about one out of three respondents reported that their undergraduate training had covered the subject of “delivering appropriate end-of-life care”. If doctors feel that way, what about lawyers, health insurance brokers and financial advisers, who are often the first to notice cognitive impairment?
My work as a life and leadership coach is to support conversational competence. We need to change curriculums at universities and provide students with information in a format they find accessible. For instance, I’m working on a graphic novel for freshers’ week with a pullout form for students to record their end-of-life decisions. We also need employee training manuals for financial corporations.
We suffer when loved ones die and we can be part of breaking the taboo about talking about death more and planning purposefully. This is more than just making mere health decisions; it’s about love, legacy and dignity.
Helena Dolny is the author of Before Forever After: When Conversations about Living Meet Questions about Dying. Read an extract of the book here.
[Updated 10:00 am 28 August 2018 This piece previously stated that La Crosse adopted a standardised document for outlining end-of-life wishes, also known as a Polst form, in 1991. The community began using the Polst in 1997.]