This article is Part 1 of a two-part interview with Dr. Steve Miles, M.D., a professor of medicine and bioethics at the University of Minnesota Medical School whose expertise includes late-in-life and end-of-life health care.
The Q&A is part of an occasional series on late-in-life care — when chronic illness or a constellation of medical problems can cause a cascade of new needs, complications and worries. This yearlong examination of issues faced by such patients and their families is funded through a regrant by Allina Health from the Robina Foundation. It is conducted in conjunction with media partners Twin Cities Public Television (tpt), and Ampers. A TPT documentary, “Late Life: Living With Chronic Illness,” will air Thursday, June 12, on tpt 2 at 9:30 p.m. Additional showtimes are listed here. An earlier documentary in the series, “Late Life: Redefining Care,” can be seen here.
MinnPost: Are we ready as a nation to deal with late-in-life health needs?
Dr. Steve Miles: No, and the reason is actually pretty interesting. Among the developed countries, we and Australia are the two nations with the smallest [percentage] of people over 65. There are a couple reasons for this. One relates to [our] immigration levels, which are high, and to [our] birthrates, which are also relatively high. But also, one of the things that’s pretty interesting is that the life expectancy at age 65 in the United States is quite low for developed countries.
MP: So we aren’t thinking about it then.
SM: Yeah. If one doesn’t see the problem, then one can’t deal with the problem.
MP: But we’re told we have this wave of aging baby boomers coming.
SM: We do have a wave of baby boomers coming. But we’re uniquely unqualified or unprepared to deal with it because our current aging pattern has resulted in a young society rather than an old society. In Japan, it’s a totally different thing. They’re currently at about 23 percent over 65. We’re quite a bit below that — around 14 percent.
MP: Aren’t there also some psychological elements involved? Baby boomers never really thought they’d develop age-related chronic health issues.
SM: I think that that’s a big part of it. We’ve always been kind of a young-oriented society. Part of it is the way that our nuclear families wound up not having the multigenerational structures that other societies have had. We’re also an extremely mobile society, which has tended to fragment our structures. Nobody goes out and seeks older people when they move.
MP: Also, our medical system seems more set up for acute care during those last few days or months of life, not for helping people deal with the last 5 to 10 years.
SM: Well, I think that’s true, but I’m going to make a provocative comment here. Medicare was really normed on a male life course, not a female life course. When Medicare benefits were set up, [they were based on the shorter] life trajectories of men. There would be a female caregiver available to care for the old guy, who passed at a relatively young old age. The women were more likely to develop chronic conditions and then move into institutional settings because they didn’t have a caregiver.
MP: But then men started living longer.
SM: When men started requiring medicines for chronic disease, that was when we added on Part D of Medicare [Medicare’s prescription drug benefit]. Men still don’t occupy nursing homes anything like the degree to which women do, and so that’s why nursing homes still sit on the Medicaid side of the budget, which is a state/federal share.
MP: It certainly was the case in my family. My uncles died in their 60s or 70s, and all my aunts lived into their 80s and 90s.
SM: Yeah, and all your uncles were cared for by their wives.
MP: And the aunts were cared for by their nieces.
SM: Exactly. Obviously one of the interesting things about that phenomenon, the female caregiver problem, is that it has a really far-reaching effect on the life trajectory of women workers. At the time when they should be eligible for promotions to leadership positions, they take up caregiving roles that essentially cut their work course participation as professionals substantially.
MP: What are some of the misconceptions that we have about aging that get in the way of us — as individuals — from realistically thinking about how we’re going to map out our life for our last couple of decades?
SM: People naturally underestimate how long they’re going to live and the amount of financial resources that it’s going to take. One of the interesting things is that if you ask people what percentage of deaths in the United States are preceded by decisions to withhold or withdraw sustaining treatment, they’ll typically give you numbers like 1 percent, 2 percent, or 5 percent, something like that. The real number is actually 95 percent, and the reason for that is that there are three trajectories of late-life care in the United States.
One goes like this: Somebody gets Alzheimer’s disease and dies. What happens is that they have a period of decline, possibly at home, and then they move to a nursing home. They may go back and forth to the hospital for a while, but then they’re kept in the nursing home and treated with palliative measures as they pass.
The second trajectory of end-of-life care in the United States is one that goes [like this]: Somebody gets something like pancreatic cancer. They’re treated aggressively for a while, and then they’re moved into a hospice program. They may go back to the hospital, perhaps for a few short pain-relief things, and then they pass with a supportive care plan.
The third course is some sort of catastrophic illness with septic shock. They are briefly evaluated, and then a limited treatment plan is set up.
But the problem is, if the population does not understand the planning for these decisions as normal life work rather than an exceptional one, they don’t undertake the task.
MP: And that planning has to start early.
SM: Yes, because the planning is not the execution of the document, although the execution of the document is the capstone on a family conversation. The question is: How to have those conversations occur so when decisions must be made, other people in the family are emotionally prepared to deal with the fact that the loved one is dying.
MP: But those conversations also need to cover decisions that will need to be made much earlier, such as when we’re no longer able to live in our home.
SM: I think that’s right, although the phenomenon cuts two ways here. Number one, we are living longer, but also age-specific disability rates are falling. What this means is that there are more people who are less disabled at each advanced age, and so it’s not unusual to see a 70-year-old in the marathon, whereas that would have been unthinkable 25 years ago. We’re seeing a compression of disability into a shorter period before the late stages of life.
MP: What kind of late-in-life support services are needed, including here in Minnesota?
SM: Supportive services have to be [thought of] as a total ecology. The Twin Cities metro area is extremely poorly designed for this late-in-life lifestyle. The freeway system is not traversable, even for us younger guys. The housing is far spread out, which makes home-care services extremely difficult. Walking to essential services is quite a bit more difficult than in Europe. Bus service is scattered in routes that are far removed from any houses. And, particularly, once one moves to the first-ring and certainly the second-ring suburbs — and I won’t even comment on the third-ring suburbs — we basically have an urban and suburban architecture that is incompatible of supporting older people. You really can’t make up for that. That really requires an urban-planning approach to the demographic changes. To some extent we’re seeing that with infilling, but we’re a long way from having a type of city structure we need for the boomer generation.
MP: What do people do then? What services do we need to put in place then if we don’t have that infrastructure?
SM: We need a form of Metro Mobility that is on a scale that we can’t even imagine. We need to find a way to finance home delivery of groceries that we have not addressed yet. We need to radically rethink places where one gets older — perhaps in corridors of the city rather than in scattered housing across the entire metro area. For example, the best thing we could do with the Green Line would be to make it all an assisted-living line. [After the interview, Miles emailed a link to the Episcopal Homes of Minnesota, a “continuum of senior housing options” located near the new Green Line in St. Paul’s Midway neighborhood. “This was what I was talking about,” he wrote.]
SM: I think that we’re going to see advanced practice nurses and [physician’s assistants] doing more home visits. We simply failed — and failure is not too strong a word — to provide enough geriatricians for the population. The number of geriatricians is unbelievably small. Even to this day, there’s no geriatric fellowship program at the [University of Minnesota Medical Center]. There’s one over at [the Hennepin County Medical Center], but [at the U], we simply did not address the problem. Period.
MP: Yet 20 years or so ago, everybody was saying this would be the next big field all the young doctors were going to go into.
SM: They didn’t. The medical training infrastructure and the salary structure were designed instead to promote and push high technology.
MP: What can families do then? If the community is not going to have these support systems in place, how should families prepare?
SM: I think there are several things that families should do. Number one, families have to approach the housing problem as central to the issue of late-life community survival. This essentially means moving into a high-density housing area — if not an assisted living or independent living complex, then into an urban neighborhood where services can be provided at a high density so that the services are reliable. So that’s the number one issue.
The second issue is that everybody should sit down with a life-expectancy calculator and a retirement planner and take a look at the cold, hard numbers of how their retirement assets fit with their predicted life expectancy. [If married or with a partner], they should particularly address the question of what happens if one party gets disabled. How does the family address the potential problem of one person’s assets cannibalizing the possibility of a stable retirement for the other? Separation of assets may be required to prevent that. That’s not the same thing as a divorce, by the way. I want to be clear on that.
The next thing they have to do is engage in health-care planning. The fundamental task in health-care planning is to identify, for each person, who speaks on their behalf should they become unable to do so. In the common situation of a four-generation family, which is what we now have rather than a three-generation family, family structures often morph into unusual structures.
As “Saint” Oprah once said, “All families are dysfunctional.” Well, when you play that out over a four-generation family, it may well be that a niece or nephew is actually a better decision-maker because they have a more loving and intimate knowledge of the older person than a son or even a spouse. In that sense, designating who is the primary person to represent the patient’s wishes becomes the critical act.
MP: That can be such a charged issue for the family.
SM: If you think it’s charged before the event, you ought to see what happens after.
MP: Does the older person make that decision? Is that something that they need to think about way in advance?
SM: They must.
MP: Can they make the decision quietly, or do they announce it to the family?
SM: They have to announce it. This is not the same thing as the decision about who gets the money. They can leave the money to their kids. I don’t care. But they’ve got to make it very clear that, “My niece Stephanie, who’s been taking me to the doctor …,” or even, “My best friend who lives down the hallway in the assisted-living center … knows who I am even more than my kids and should speak on my behalf if I get ill.”
MP: And then the family needs to respect that.
SM: Yes, and so does the hospital. In a way it’s the issue of the [Sharon L.] Siebert vs. St. Mary’s [Rehabilitation Center] case in Minnesota a long time ago. The parents of an adult woman who was a lesbian kicked the partner out of the hospital. The partner had to sue to get back in the game, even though they had gone through a ring ceremony and owned a house together. The partner prevailed because she could demonstrate there was a contemporaneous loving relationship between the two. In a sense we are all Sharon Siebert now because the people we want to speak for us are not defined by consanguinity.
MP: What other challenging decisions need to be made in advance? What about choosing the right doctor for late-in-life care?
SM: I think one of the biggest problems is that care tends to fragment under specialization. You still need a doc who knows all of you. A rheumatologist and a cardiologist and a pulmonologist doth not a person make. You need to have somebody who has the big picture — if for no other reason than to prevent the rheumatology medicines from interacting with the cardiology medicines. This should be a clinic that has a decent system for connecting 24/7 to a nurse practitioner or physician’s assistant triage system. In other words, a place that you call home — your medical home.
Friday, Part 2: Psychological issues — and when is it time to move?