21 May 2015 | Building Leadership & Capability
‘Give them the damned banana!’ was internationally renowned health writer and thinker Dr Atul Gawande’s message to aged residential care homes where safety concerns dominate at the expense of residents’ quality of life.
Dr Gawande was talking during an all-day forum for health, disability, aged-care and end-of-life care professionals. The forum was hosted by the Health Quality & Safety Commission, with support from PwC and thanks to the Auckland Writers Festival. Dr Gawande’s comments came in an afternoon lecture devoted to the themes of his latest bestselling book, Being Mortal: Illness, Medicine, and What Matters in the End.
‘I think we’ve lost sight of the idea that well-being is more than your health and your safety and your survival,’ said Dr Gawande.
‘We see it in our old age homes. For example, in the fact that people are told that you can’t have a drink. You can’t have a cocktail at the end of the day. Because it’s not safe. [In Being Mortal] I describe meeting an Alzheimer’s patient, 85 years old, who’s hoarding cookies because they have a medically prescribed diet that says they can only have pureed foods.
‘I was giving a talk at a White House meeting and one of the senior staff advisors to the President pulled me aside afterward and confessed that she’d been sneaking bananas into her mother with Alzheimer’s in a nursing home against the rules of the nursing home. Give them the damned banana!’
Dr Gawande said the common thing you will hear people in aged residential care say is, ‘When do I get to go home?’
He said, ‘Home is where you get choices, have some choice about the risks you can take and not take … When you get older, the thing that becomes very important is having deep connective relationships to others, and yet we often sever those ties. We bring you into a nursing home because you can’t take care of yourself any more but that doesn’t mean you can’t maintain your friends.
‘Why couldn’t we sustain those connections? Allow you to keep going to the church or synagogue or the religious establishment that you were part of, instead of forcing you into the one that you are in. [In Being Mortal] I describe my own wife’s grandmother withering entirely because of losing all those ties that were the sources of meaning and existence and dignity for her.’
Those working in medicine as well as aged residential care have failed to understand that people have priorities besides just living longer, said Dr Gawande.
To find out what those priorities are, ‘there’s a highly technical procedure, sometimes difficult … You must ask people. And we don’t ask. When we don’t ask, you can commonly end up in a situation where the care you are delivering is completely out of alignment with the goals and priorities that a person has in their life. And when that happens, that’s when you get suffering, that’s when you get an 85-year-old hoarding cookies.’
Dr Gawande is a professor at Harvard Medical School and the Harvard School of Public Health, director of a centre for health system innovation, and chairman of a non-profit organisation making surgery safer around the world.
He is also a surgeon at Brigham and Women’s Hospital in Boston, and asked some of the end-of-life experts he spoke to for Being Mortal about what he should be doing differently when speaking to seriously ill patients.
‘It started with “You should stop talking so much. You should be talking less than 50 percent of the time in these conversations. They should be telling you what matters most to them.” And I paid attention in my clinic and I found I was talking more than 90 percent of the time. To my horror. Because my model of thinking was that my job as a clinician was to give people the facts and that they would then tell me what their answer is. I gave them option A and option B and option C and “here are the pros and here are the cons and here are the risks and here are the benefits and now what do you want?”
‘What they [the end-of-life experts] pointed out is that instead we have to graduate to an idea of clinician as counsellor. You have to talk about the options in a situation like that. But you also have to ask people what are their goals and priorities and then match what you can offer to what they need and make a recommendation.
‘And there were a few basic questions that we could ask. Those basic questions were ones like what is your understanding of where you are with your health or your illness at this time? What are your fears and worries for the future? What are your goals and priorities if time becomes short? What are you willing to sacrifice and what are you not willing to sacrifice in the course of your care for the sake of your mortality? Does your family know the answers to these questions?’
The organisations Dr Gawunde works with in Boston have produced a seven-question Serious Illness Conversation Guide they are training health professionals to use.
‘It’s combined with identifying in the system who the highest risk people are for dying. The most effective powerful question to ask is to ask clinicians, “Would you be surprised if this person were to die in the next year?” And if you would not be surprised then you should be having a conversation.
‘Fewer than a third have a conversation about their goals and wishes before the end of their life. And on average it’s only about 30 days [before they die], which is very late to be having it. So we have gone through and created a system to ask the clinicians about their list of patients in clinic.
‘The palliative care teams don’t just see their consultation patients but think about all of those patients who are at risk of dying in the next year, and they will ask clinicians if they have yet had a conversation with the patient. It’s a simple email trigger. If we identify a patient, they send an email. Usually within two emails 90 percent of the clinicians will have the conversation … and it’s occurring at about four to five months ahead of when they die.’
Dr Gawande saw great potential for such an approach in New Zealand.
‘In America, we are still battling over whether this is a death panel … here in New Zealand I think there’s much more understanding and willingness to recognise that these are conversations worth happening. It can be made a normal part of what happens when you enter a care home or have certain conditions that make no one surprised that you might die in the next year.
‘The hard part I see here, and I think this is where further discussion is possible, is that ironically in the United States we provide full coverage for hospice care, and in the last five years we have seen a dramatic transformation: we went from less than 20 percent being in hospice care at the end of life to this year reaching almost 50 percent of our population in hospice care. Here in New Zealand I think it’s probably under 20 percent from what I understand, and reaching a point that we can make the conversations happen and then a system be available to people to actualise that ability [is important].
‘Because in the end all you are doing is trying to show the imagination that a good life is in fact possible all the way to the very end.’
For more information about advance care planning in New Zealand, and to download resources to help people draw up their own plan, visit www.advancecareplanning.org.nz.