Among the things we particularly dislike even thinking about, let alone talking about and planning for, is the potential indignity of aging. And if we have no advance thoughts about it, we may become just medical “cases” to doctors rather than human beings with feelings. Let’s explore approaches that help maintain dignity.
In Section H61 of Freedom, Time, Happiness (the free book accessible from the top line of this website) I mentioned that our Life Two isn’t an unchanging stage of life. Rather, there’s a general pattern of change. The lingo refers colloquially to three stages of activity: go-go, slow-go and no-go. Most of us experience go-go (the heady early years of retirement, when we do the things we’ve been yearning to do) and slow-go, when our pace settles down and our lives (and perhaps our homes) downsize.
Statistics suggest that perhaps a third of us experience no-go, when our activities are severely curtailed. Indeed, we may need external help in this phase. And that raises issues of personal comfort and happiness that the medical profession does not always deal with, if they focus on medical concerns and survival (length of life) more than on the quality of life. Let me give you some quotes from doctors in three countries who recognize the difference and are doing something to influence the profession’s priorities, so that they focus on care when they cannot cure.
In the UK, Dr Matthew Boulter is quoted as describing then-current (2014) practice as follows: “If you are struggling at home, we put you in one room, we bring your bed in, we bring your toilet in and we bring your meals in and that’s you. And the system turns around, with its head held high, saying: ‘She’s medically well and she’s catered for. She’s got a roof over her head, she’s warm, she’s got food in the fridge, job done.’ No one’s ever asked that person, what’s important for them?”
The reporter who wrote the piece adds that one man (when asked what’s important) dreamed of seeing his dog run on the beach again. A woman yearned to have her hair properly washed after months in which carers had applied only dry shampoo. Another woman hadn’t left the house in five years, and her dearest wish was to visit a newly opened branch of Sainsbury’s (a grocery chain) and choose her own groceries. These are little things that may be of major importance to the individuals concerned but aren’t statistically important as regards the medical outcome.
In Canada Duncan Sinclair, a leader in healthcare reform, makes it personal: “My needs and wants … add up to a short list: respect for my continued dignity and personhood; staying in my home; no pain or suffering; and not being a burden to others.” He expands on the first of these as follows: “I want to be considered a person, not a patient, regardless of how much I then depend on a panoply of physicians, nurses, support workers, therapists and pharmacists … I want to remain Duncan Sinclair, not the incontinent, demented old guy in bed in Room 6.” And on the third one (avoiding suffering) as follows: “This is less about avoiding pain and discomfort than it is about maintaining my status as a person with the right to make my own decisions, including decisions about my very existence.”
In the US, Dr Atul Gawande, author of Being Mortal, has spoken extensively (and made a movie) about the issue. In a keynote address he said: “What we’ve seen is a 50-year experiment with medicalized mortality – that experiment has failed.” He added: “People go into medical school because it’s a chance to fix … But when I got into practice, I found I spent a lot of time with people whose problems I couldn’t fix … I’m a surgical oncologist. I think end-of-life care is a basic skill that we haven’t really been taught. It’s very clear that often quality of life and curative intent are separated.”
I have no idea myself the extent to which these quotes capture medical practice, or whether they only describe one end of the spectrum. A doctor friend of mine involved in community and psycho-social care in Ontario, Canada, tells me that medical care these days includes a professional team that includes social workers and nurses, and they are indeed focused on care, not just on cure.
Why does this matter? Because it’s something that you may well have an opinion on, perhaps even a strong opinion. If you find that in your case the focus seems to be less on quality of life than on length of life, you should express that view clearly so that it is discussed with family and professional care providers, and recorded.
The law differs from country to country, but regardless of the law, you can still express yourself. The law determines the extent to which your wishes can be carried out, given the context of circumstances and taking into account the medical feasibility of your wishes. The documents involved are typically called an advance care directive (or health care proxy) and a living will. The advance care/health care document names somebody (and, usefully, an alternate) to make decisions for you when you are no longer capable of doing so for yourself. The living will says what interventions you would or would not prefer to keep you alive, such as the extent of resuscitation, and may include aspects of treatment and care for known conditions.
These are documents that can be prepared with professional help and advice, and discussed and a copy left with your physicians and family members. In blog post #24 we discussed talking to your children and leaving documents with them. This is part of that same theme, empowering the younger generation to support you in this stand. So consider whether, in your case, it might perhaps be better to start thinking about these issues in mid-life rather than in retirement. And you’ll be doing something else, in addition. You’ll be providing your children with the concept of stages in their life too.
There are ways to help you think through many of the issues.
For example, Dr Gawande says that anyone involved with your end-of-life care needs to know five things:
- What is your understanding of where you are in the course of your illness?
- Your fears or your worries for the future.
- Your goals and priorities.
- What outcomes are unacceptable to you? What are you willing to sacrifice and not?
- What would a good day look like?
Much more poignantly, there’s a blog posting that describes teenagers nearing the unfortunately predictable end of their lives, and the little things (yet very important preferences) they have to deal with. If visitors arrive when you’re asleep, do you want to be woken? If they start crying, would you prefer them to step outside or talk about their feelings with you? If death is approaching and you can no longer speak, what would you want those who surround you to know?
This is particularly important for patients under 18 in the US, as they have no legal rights to make advanced care choices for themselves, although regardless of their chronological age these teenagers have shown themselves to be capable of addressing intimate topics: mortality and pain, as well as love, friendship and connection. One teenager wrote notes to her family, and in the last days frantically asked to include a final thought in her farewell letter. To her grandmother she wrote: “I hope there is potato salad in heaven as good as yours.”
The document that contains a template for them is called “Voicing my choices” and it’s available from agingwithdignity.org.
I hope you’re inspired by this courage to make your own advance preparation.
It’s difficult to be dignified as the end nears, but these approaches help.
I have written about retirement planning before and some of that material also relates to topics or issues that are being discussed here. Where relevant I draw on material from three sources: The Retirement Plan Solution (co-authored with Bob Collie and Matt Smith, published by John Wiley & Sons, Inc., 2009), my foreword to Someday Rich (by Timothy Noonan and Matt Smith, also published by Wiley, 2012), and my occasional column The Art of Investment in the FT Money supplement of The Financial Times, published in the UK. I am grateful to the other authors and to The Financial Times for permission to use the material here.