LifeCycles is devoted to helping families manage the myriad of practical issues and concerns that arise when aging loved ones begin to experience significant changes in their health status. When it comes to navigating major life transitions, nothing can strike fear into the heart of families more than discussions about death. Many people avoid this important topic altogether, to the point where they end up in regrettable situations.
One person who is making great strides nationally in helping families lighten the burden around end-of-life planning is Pulitzer Prize winning journalist and author, Ellen Goodman, co-founder of The Conversation Project. Launched in collaboration with the Institute for Healthcare Improvement (IHI), the Conversation Project is a public engagement campaign with the goal of having every person’s wishes for end-of-life care expressed and respected.
Much like LifeCycles founder Lisa Horowitz, Goodman’s interest in this area was heavily influenced by her own personal experience. In Ellen’s case, she was left with doubts as to whether or not she had acted according to the wishes of her mother, whose dementia had left her unable to communicate effectively prior to her death. For Lisa, her professional expertise around advance care planning was heightened by her firsthand experience with three family members before, during and after their deaths.
We recently had our own conversation with Ellen Goodman that covered a number of topics relevant to advanced care planning and caregiving, ranging from the disproportionate impact of caregiving on women in our society to the need to bring humor and joy into the conversation about death.
First let’s have a look at the October, 2015 announcement by The Center for Medicare/Medicaid Services (CMS) that it would begin reimbursing health care providers for having discussions with their patients about their options for end-of-life care, aka, advance care planning. You may remember the highly politicized hype about “death panels” during the last presidential election that put an inaccurate spin on conversations that people would be having with their providers about their wishes for treatment. It planted an unrealistic fear in people’s minds that they would be forced into certain decisions against their will. This could not have been further from the truth. The current ruling encourages people to exercise their own choices after reviewing all available options with medical professionals.
LifeCycles – Tell us the significance of the new directive that has effectively put “death to the death panels,” now supporting the extension of conversations that have been taking place among families to health care providers.
Ellen Goodman – I think it’s a very powerful moment of change when CMS has decided to reimburse doctors for talking to their patients about end of life wishes. What’s particularly powerful about it is that they aren’t just talking to people who are terminally ill or people who are ill at all, or even people who are just over 65, since Medicare covers people who are not just senior citizens. It’s particularly powerful that it’s covering people who are not sick at all, because our whole goal is to say that, you know it’s always too soon to have these conversations until it’s too late. And you don’t know when the moment will come. So we believe that people should have these conversations at the kitchen table with the people that they love, and then have these conversations with their doctors. We think this will both encourage people to have these conversations with their families, and ensure that the wishes that they express there will be respected by the healthcare system when there is a crisis.
LC – So when people do make their wishes known, and they do complete the paperwork and they have a healthcare proxy, what do families need to understand about the kind of diligence that’s required to make sure that those orders are carried out?
EG – Well the first thing that families need to do is to feel comfortable really talking about what matters to people at the end of life. The Conversation Starter Kit is not just about tubes and respirators, it’s about how you want to live at the end of life and about what matters to you. For example, 70% of people say that they’d like to die at home, and 70% of people die in hospitals and institutions. So we encourage people to use our Conversation Starter Kit to discuss values and really what matters, and also to get everybody in the family on the same page. Because one of the worst things that can happen is that your kids would get into a conflict over what your wishes are… One of the fairly startling statistics is that about half of the people over 65 who end up in the hospital can’t make decisions for themselves.
LC – That’s frightening.
EG – So we need to have identified somebody we trust and have talked with … those people are the decision makers for us. And they are then empowered to have this conversation with the healthcare system if that’s necessary. So for example, if you need surgery, it is your health care decision maker who will decide. If you’ve said to that person, you know what, I know at this point in my life, if something goes wrong I don’t want to be operated on, then that person is empowered to make sure that the healthcare system respects your wishes. Hopefully, you’ve also spelled out what you wanted in an advance directive. But to be honest, there’s no checklist on earth, no medical checklist on earth that’s long enough and that can cover every conceivable medical contingency…
LC – Of course.
EG – … so the most important thing really is to have somebody who knows you and who can speak for you.
LC – Right, to have a strong advocate who’s willing to go to bat and do what has to be done to honor their loved one’s wishes if possible.
EG – One of the things we know is that people who haven’t had the conversation, then survivors are left more depressed, more guilty and more uncertain about whether they have done the right thing. That was really one of the great motivations for the Conversation Project was really to think about survivors, because all of us want to leave the people that we love feeling good… It’s not that you won’t mourn, it’s not that you won’t feel loss, but that you won’t be tortured by the sense that maybe you’d done the wrong thing.
LC – What do you think accounts for the disparity between intention and action, because you mentioned there’s such a discrepancy between how many people think it’s a good idea to have the conversation, but so few people actually do?
EG – Well the biggest reason for the discrepancy between what you want and what you get is that people haven’t had the conversation. We did that survey two years ago that showed that 90% of people think it’s important to have these conversations, but only 30% have had them.
LC – What do you think is stopping them?
EG – When we looked at those figures, the main thing was that people said to themselves, well, it’s too soon. I’m fine. I’m young, or I’m healthy, or something. And that’s probably a cover story for just not wanting to talk about it, you know? I think I’ll put my hands over my ears … now we don’t have to talk about it. But again, as I said before, we do know that it’s always too soon to have these conversations, until it’s too late.
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From our experience, we know that there are important follow-ups to starting this essential family dialogue. On the practical side, we advocate keeping the conversation current and relevant. Once documents are drafted, it’s important to make sure that caregivers and other responsible parties know where to find them and to review them.
Part of the coordination of services we provide to our clients is staying in touch with ongoing developments within their families, making sure that new circumstances can be managed properly. With everyone prepared and on the same page, we are more likely to preserve harmony within the family.
The idea that a person can take control and be at peace that their wishes will be honored is invaluable. This forms the foundation for the holistic approach we take to managing the details of a major life transition. The significance of the new Medicare ruling is that now medical providers have additional motivation to actively participate in this process from their end. Between the conversations at home and those taking place in medical offices, we can now create a seamless circle of communication between all parties involved with caring for our loved ones during their time of need.
If you have questions about anything regarding a loved one’s changing life circumstances, please contact us for more information. We offer guidance to families in coordinating medical decisions with financial, legal and other concerns. We provide ongoing, practical support to caregivers while they are caring for their loved ones.
Stay tuned for Part 2 of our conversation with Ellen Goodman, when we take a look at the disproportional impact of caregiving on women.