‘We Want Everything Possible Done for Mom’
Families need comprehensive support
Joanne Lynn, MD, a Washington, DC-based geriatrician and director of the Center for Elder Care and Advanced Illness at Altarum Institute, has dedicated her career to finding ways to improve health and healthcare at a sustainable cost. Lynn tells Medical Ethics Advisor how hospitals can achieve ethical end-of-life care.
MEA: Are hospital “medical futility” policies helpful?
Lynn: Sometimes, hospitals have found futility policies helpful, especially with situations where there is no family. But I don’t think they have found them to be terribly helpful when there is a lot of anxiety floating around among the people who do care for this person.
We have always had challenges with the boundaries of end of life. When the person is still alive and breathing, it’s sometimes hard for families to believe that they are really coming to the end. They think that there must be one more thing that could really pull them out of this situation, especially for younger people. They may be able to see there really aren’t any options for the 97-year-old person. But for the 57-year-old, it’s harder to believe there isn’t something that can turn this around and make it all go away.
MEA: What type of hospital policies would you like to see for end-of-life care?
Lynn: The kind of hospital policies that I would love to see would be offering really comprehensive support and care — that we’re with you through to the end of life and beyond, and we know how to support you in bereavement.
Like families, we hope that something will show up that makes this difficult situation go away. But on the assumption that this is really what we have to deal with, let’s deal with it together. The hospital needs to offer some emotional and spiritual support.
Hospitals also need to offer support during the immediate after-death period, when the family is faced with questions on how to deal with funerals and memorials. For example, there needs to be clarity as to whether they can offer an autopsy if the family is concerned about whether they are hiding something. Families are much easier to convince that the care team has nothing to hide if they are willing to offer that. It’s among the things that helps them come on board when they are otherwise very anxious.
The hospital does not need to offer useless or harmful treatments. But we do need to do that with compassion and sincerity. You need to have people that are good at communicating. You may need to buy some time if you possibly can, if the family needs a few hours to pull things together. It may inconvenience the delivery team, but it can be critical for the family to come together.
MEA: What do you see as the ethicist’s role if the family is demanding care that’s not clinically indicated?
Lynn: It depends on what the family is demanding. If the family is demanding everything be done to keep the person alive for three hours until the spouse or son can get here, that’s a very different situation than wanting to proceed with surgery for someone who is way too unstable for surgery.
Sometimes, in their anguish, families demand things that really cannot be provided, and they need to be brought down to earth. That can be very hard. Sometimes, you are talking to 30 people who are all queueing in your lobby. The family that shows up demanding all sorts of things, where Mom or Dad is dying, usually implies a substantial deficit in what’s been going on with home care, and maybe even hospice.
To have the records and be able to get in touch with people who’ve been part of this person’s care in the past puts the hospital ethicist in a better position to bring in the right sort of supports. It might be useful for the in-hospital care team to know that certain family members have been using mom’s Social Security to support drug abuse. Ethicists need to negotiate among the parties to try to craft a way through that is supportive to everybody, but doesn’t abuse the patient in desperately trying to extend life, and doesn’t leave the families feeling as though they aren’t being heard.
In the way we now live, there shouldn’t be very many people who are known to be at the end of life that are not part of a care system that’s highly supportive. Every once in a while, you have somebody who had a terrible stroke and dies suddenly. But more than 90% of people who die, die past Medicare age, and of things that existed many weeks ahead of their dying. That gives us an opportunity to build systems that work.
But you still will have unreasonable families, at times. I have sometimes been pushed to the wall, when I’ve had to say, “Neither you nor I have the clear authority to make decisions for this person who can’t make decisions for him- or herself. If we can’t make a decision between us, we’re going to have to go talk to a judge.”
The ethicist has to be willing to have that card in the deck and have an emergency legal hearing. In my experience, thus far, I’ve never had to actually do it. Families will say, “Give us a few minutes to talk this over.” Just saying there is a possibility of going to court has made all parties willing to try harder to find a decision.
It helps them realize that they don’t have clear authority, but neither do I, and if we can’t decide what’s best for this person between us, we have to get a neutral outside party. They probably thought they had the authority and could bully their way through. I’ve carried the emergency number for the judge in Washington, DC, for all my clinical life, until the card wore out. But I never actually had to call.
SOURCE
- Joanne Lynn, MD, Director, Center for Elder Care and Advanced Illness, Altarum Institute, Washington, DC. Phone: (202) 776-5109. Email: [email protected].
Joanne Lynn, MD, a Washington, DC-based geriatrician and director of the Center for Elder Care and Advanced Illness at Altarum Institute, has dedicated her career to finding ways to improve health and healthcare at a sustainable cost. Lynn tells Medical Ethics Advisor how hospitals can achieve ethical end-of-life care.
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