Life Cycles Resource Management

Great work, Deloitte!

Despite documented evidence showing that even thinking about your own death can create a feeling of peace and calm that may lead to a generally better state of health, we’ve seen that people still resist talking about this important subject. We’ve explored with Ellen Goodman, Co-founder of The Conversation Project, the great strides she’s made in helping families to embrace an open dialogue about our end of life wishes. We also know from our own experience here at LifeCycles that direct communication about the more frightening aspects of aging, including preparation for death, tends to make everything less threatening. Taking proactive steps such as drafting a health care proxy or a living will can decrease overall anxiety and establish the basis for further communication.

Clearly, we are in the midst of a cultural shift, by necessity! According to the U.S. Census Bureau, the number of people age 65 and older will more than double between 2010 and 2050 to 88.5 million. In this third installment of our dialogue with Ellen Goodman, we’ll explore the specific ways that The Conversation Project has distinguished itself amidst this shift. We’ll also take a look at the latest tool they have developed to address the needs of families coping with Alzheimer’s Disease and other forms of dementia.

LifeCycles - You have noted that there is a cultural shift now, with death being talked about more readily. Do you think the shift is significant?

Ellen Goodman - I do think there has been a change. Part of that is in the aging of the baby boom generation. And the baby boomers have been the change agents in our culture all the way through. They brought about the Civil Rights Movement, the Women's Rights Movement, the Gay Marriage Movement… and we now know that the longevity revolution means that we are living 30 years longer than Americans did a century ago.

So we're dealing with the frailty and the death of our parents, and we are a generation that speaks out, Lord knows… this particular generation is the one… that changed the way we give birth in America… some time ago it was not the doctors who said, please, let's go into the birthing room, get your feet out of the stirrups, bring the video camera, let's have the baby in a bathtub. It was not doctors who said that, it was our generation who said you know what, giving birth is not just a medical experience, it's a human experience. And now we're saying this about dying. We have a different attitude towards the medical establishment, too… instead of seeing doctors as God, we see them as partners.

LC - Do you think that this sort of move towards allowing people to have more control and have their wishes met around dying has the potential to be a unifying issue among people of different beliefs?

EG - Well it is. It is a unifying issue. I mean if 90% of the people think it's important to have the conversation, 90% of the people don't agree on anything, including the national anthem… The thing that really connects people to this issue, too, is storytelling. This generation of… adult children of elderly parents who have children themselves, the "club sandwich generation," has begun to tell the stories. You mentioned before the cultural change piece ... I think that's a huge part of the cultural change.

When I was a young woman, every woman of my generation had experienced discrimination and harassment - sex discrimination. But we thought we were the only ones. And it was only when we began to share stories that change happened. And now we're seeing this around end of life. It's only when we've begun to share stories that change is happening. And the thing that's remarkable to me with my journalist hat on, is that everybody has a story. Everybody. I tell people that I'm involved in encouraging end of life conversations and there's kind of half a beat, and then out comes a story. And this storytelling piece is really at the heart of the culture change.

LC - What distinguishes the work you are doing from what other people are doing in this field?

EG - We've had an initiative that brings the Conversation Project to people where they work, where they live and where they pray. So we've been outside of the medical system as well as inside. We've had a faith initiative, because people often talk with their spiritual leaders in crisis, and they haven't necessarily been comfortable having these conversations. We've had projects in the business world, because every workplace understands that caregivers are stressed, and that part of meeting that stress is to have comfortable conversations both before and after a medical crisis. And to have them in their communities.

We have PSA's, and we have a public messaging campaign that has been very wonderful, and people are more than welcome to join our community and have access to all of our materials. We also have about 300 communities in 40 odd states who are connected to us and trying to bring the Project to their own [people].

We also have a bunch of tools… our tools are different. Our tools are about values, our Conversation Starter Kit is about values - what matters to you at the end of life, not what's the matter with you. We also have a tool for families who are facing serious illness in their children, and we're just putting one together that should be up in another month that's out for review by our experts, for families that are experiencing Alzheimer's and dementia. And that has been something that we were asked for, because that is really one of the hardest pieces of this whole world.

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Well good news! The new Conversation Starter Kit designed specifically to help families and patients with Alzheimer’s and other forms of dementia is now available. Here’s some information excerpted from The Conversation Project’s latest press release:

At the heart of the project is the Conversation Starter Kit, a free downloadable step-by-step guide that helps individuals and families have “the conversation” about their preferences for end-of-life care. Once the Starter Kit became widely used by health care professionals and families, The Conversation Project began receiving requests for a guide specifically designed to help those affected by Alzheimer’s disease and other forms of dementia.

“We responded eagerly because we, too, have had personal experiences caring for family members with Alzheimer’s disease,” says Ellen Goodman, Pulitzer Prize-winning journalist and founder of The Conversation Project.  “We appreciate the difficulty and the importance of having these conversations and collaborated with caregivers, social workers, geriatricians and experts to bring forth a guide to help ease families into this topic. We hope this new resource helps caregivers begin these talks in the early stages of decline. It’s always too soon -- until it’s too late.”

Goodman founded the nonprofit after serving as caregiver to her mother with Alzheimer's disease for many years. She realized that while she and her mother had talked about everything, they never discussed how she might want to spend her final days. With each passing decision, Goodman became unsure if she was doing right by her mother and upholding what her wishes would have been. This new resource hopes to change that fate for families in similar situations.

The new Starter Kit created specifically to address the issues associated with Alzheimer’s disease and other forms of dementia is the first of its kind and is now available free for download on the organization’s website. It provides questions that can help caregivers navigate the approach to the conversation based on the cognitive level of the impaired, and can also guide decision making even if the illness is so advanced that the loved one has lost the ability to communicate.

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As always, our goal here at LifeCycles is to help families manage the multitude of practical and administrative concerns they face when dealing with the changing health status of their aging and/or medically challenged loved ones. It’s also an exciting time to be working in this space, as a number of new innovations are being made in clothing, nutrition, housing, architecture and design in general, all of which open new possibilities for ways we can care for our loved ones.

We've been talking about this a lot.

Here's the latest post from LifeCycles founder Lisa Horowitz in the May/June edition of NAIFA-National's publication, Advisor Today, where Lisa is a member of the Editorial Advisory Council.

April, 2016

In talking with Ellen Goodman about her work with The Conversation Project, we touched on the fact that in our society, the responsibility and therefore the consequences of caregiving fall disproportionately on the shoulders of women. This has far reaching implications ranging from personal and practical to economic and political… LifeCycles - What can you say about the intersection of caregiving with gender, and how a disproportionate burden falls on women? Ellen Goodman - Well, I think that women are still the caregivers in our society. It’s not that they are the only caregivers - there are a lot of men who are caregivers as well. But I think it’s two thirds of the caregivers are women - both professional and familial… If you were to parse the most powerful reason for economic inequality, it would be that women are caregiving. Those women whose lives follow the absolute same trajectory of a traditional male are not experiencing the kind of economic cost that women who are caregivers are experiencing. That does not suggest that we shouldn’t be caregivers at all! It just is the reality. And the amount of time we spend caregiving children, but then also the amount of time we spend caregiving elders, and spouses… it’s time out of our economic history… even [Supreme Court] Justice Sandra Day O'Connor left the supreme court to take care of her husband. So it’s just a huge, huge issue that we have not come to grips with at all … LC - It makes you wonder what will be a catalyst for change in that - if there will be sort of a critical mass of awareness among women. Where will the impetus for change come from? EG - I don’t think anything will change until women regard this as a voting issue. Until they really understand that it isn’t each woman’s private individual issue, but is a collective issue, and make it a voting issue.

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Compounding the prevalence of women in the ranks of caregivers is the fact that as of 2014, women working full-time were still only earning 79% of their male counterparts. Taking into account ethnicity, those numbers can drop to as low as 54%. In their current study, The Simple Truth about the Gender Pay Gap (Spring 2016), The American Association of University Women (AAUW) demonstrates this pervasive disparity, which at its current rate, will not resolve for another hundred years. Given that this is a voting year, it seems like a good time for us to review some of the other facts around this issue, and why it’s important for us to keep these things in mind when choosing who will head up our next administration. The higher responsibility for caregiving by women has an impact on work performance, economic status, physical and emotional health, and overall quality of life. Here are some recent statistics compiled by the Family Caregiver Alliance*:

An estimated 66% of caregivers are female.

Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.

Caregiving reduces paid work hours for middle aged women by about 41 percent.

One national study on women and caregiving highlighted the conflicting demands of work and eldercare. The study found that: 33% of working women decreased work hours, 29% passed up a job promotion, training or assignment, 22% took a leave of absence, 20% switched from full-time to part-time employment, 16% quit their jobs and 13% retired early.

The financial impact of lost social security benefits due to early exit from employment was approximately 15% higher for women than it was for men.**

Women who are family caregivers are 2.5 times more likely to than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).

One in five female caregivers age 18 to 39 said that stress was nearly always present in their lives; nearly twice as many as those who were not caregivers and for male caregivers.

One four-year study found that middle-aged and older women who provided care for an ill or disabled spouse were almost six times as likely to suffer depressive or anxious symptoms as were those who had no caregiving responsibilities.

The same study found that women who cared for ill parents were twice as likely to suffer from depressive or anxious symptoms as non-caregivers.

Researchers found that more than one-third of caregivers provide intense and continuing care to others while suffering from poor health themselves.

25% of women caregivers have health problems as a result of their caregiving activities.

* Unless otherwise noted, all statistics were derived from the Family Caregiver Alliance Publication, Women and Caregiving: Facts and Figures - https://www.caregiver.org/women-and-caregiving-facts-and-figures

** MetLife (2011) The MetLife Study of Caregiving Costs to Caregivers. Retrieved (January 2015) fromhttp://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf

March, 2016

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.