Solutions Through Compassionate Communication.
We recently attended our son’s wedding. It was beautiful. The weather was perfect and our son and his new wife couldn’t have looked more radiant. What amazed me the most, however, was the amount of planning that went into preparing for the big day.
Months before the ceremony our son’s fiancé (and he) began the process. Planning included the size and color of the calligraphy of the invitation, floral arrangements, seating at the wedding dinner, down to the ‘official’ color of the event.
Besides our will, powers of attorney, trust documents, and other legal, financial, and end-of-life instructions that we should share with family members, we need to prepare one other item: our ethical will.
Ethical wills (or legacy letters) are designed to transmit values from one generation to the next. They set out our beliefs, principles, and hopes for those who succeed us. An ethical will often include what we’re grateful for and our expectations for the future. They are best written over an extended period. Their purpose is to express what we hope our children will continue to follow and abide by.
Ethical wills are nothing new. Their origins are rooted in Biblical soil. Think of Moses speaking his parting words to the children of Israel as they were about to enter the Holy Land. Or, Jesus’ Sermon on the Mount in which he told his disciples that, among other Beatitudes: “Blessed are the meek for they shall inherit the Earth.” [Read more…]
There’s no sugarcoating it: losses hurt. Whether it’s “aging out” of favorite activities, loss of meaningful work, or even the death of a person you loved, slogging through the pain and grief and anger of loss is hard!
But there’s another way.
Acceptance may come slowly and feel forced. We greet it with tight lips and a closed fist. We resonate with Ann Lamott’s, “Everything I ever let go of had claw marks on it.” Our fist is being pried open. We feel like victims.
Relinquishment is acceptance-plus. It’s an active, intentional attitude of letting go. We open our fist and freely offer whatever is being taken away. We may not be able to avoid our loss but we can control our response to it. We meet it with an open hand, an open heart, and a free spirit. [Read more…]
I recently learned that a dear friend has chosen hospice care over yet another round of debilitating chemotherapy. It was an enormously tough decision for her and her family. She’s not that old (66), and her zest for life is infectious to all who know her.
Thousands of Americans confront this decision every day. Most say they want to die at home, yet 75 percent end up dying in hospitals or nursing homes. More often than not they opt for hospitalization, I believe, because they and their family members are unaware of the risks involved with aggressive, expensive treatments that may rob them of their quality of life. Did you know that such life-prolonging care accounts for 30 percent of total Medicare spending? Astounding!
Now, imagine if you could view short videos that graphically depict what happens when you undergo emergency, life saving measures that risk robbing you of any quality of life and could result in your remaining in a hospital until you die.
These short films demonstrate what goes into such treatments as emergency CPR and breathing tubes. They have undergone rigorous review by leading experts in medicine, geriatrics, oncology, cardiology, ethics, and decision-making. Clinical studies show that patients who have viewed these videos have overwhelmingly opted out of costly, life-prolonging treatment.
Produced by a nonprofit foundation comprising clinicians dedicated to educating patients about their choices for medical care, they are used by 40 healthcare systems throughout the US. One healthcare officer commented that the videos “help physicians, their patients, and their patients’ families address the issues they need to face around end-of-life care, and make more informed decisions.” Another reported that the videos “…ensure that patients have the information they need to be active in shared decision-making, and to help physicians understand patients’ values and preferences so they can arrive at the right decision together.”
For more information check www.acpdecisions.org. ACP Decisions was founded by Drs. Angelo Volandes and Aretha Delight Davis.
Sig
Carolyn and I have been blogging for a couple of years now about how to prepare and engage in tough conversations around issues like end of life planning and ensuring our children know about legacies before we die. We believe these and other dialogues are critical to maintaining family harmony and ensuring that our wishes are fulfilled.
When I read the following survey results, I was struck by the gaps between what people wish for and what they do.
For example a survey of Californians by the California HealthCare Foundation this year found that although 60% of people say that making sure their family is not burdened by tough decisions is “extremely important,” only 56% have communicated their end-of-life wishes.
The same survey reported that while 80% of people state that if seriously ill, they would want to talk to their doctor about end-of-life care, only 7% report having had an end-of-life conversation with their doctor.
Finally the survey revealed that while 83% of people say it’s important to put their wishes in writing, a mere 23% have actually done it.
A separate 2005 Centers for Disease Control survey found that 70% of people asserted they prefer to die at home, but sadly 70% die in a hospital, nursing home, or long-term care facility.
In forthcoming blogs we’ll acquaint you with sources (other than ours) designed to help make these tough conversations easier. Meanwhile, consider which category you fit in: those who wish for the conversation, or those who have carried it out.
Sig Cohen
(The above statistics came from an excellent article titled “The Conversation Project Helps Identify End-of-Life Wishes,” by Dorian Martin, a self-described Health Guide, which appeared in the Alzheimers Section of www.healthcentral.com. See: http://www.healthcentral.com/alzheimers/c/42/155962/conversation/?ic=4027)
Sig and I recently led a communications workshop for 40 families on the topic “Necessary Conversations at Midlife and Beyond.” We divided the group into people with living parents and those whose parents had passed on. Each group was assigned questions to discuss among themselves, in order to prepare for a conversation with their own families. Here are the questions we gave the older adults, and in parenthesis the sometimes surprising answers that emerged:
1. What is your greatest concern about aging?
[The majority said dependency, helplessness, and consequential loss of freedom. This is why it’s so hard to give up driving. The second most common answer was fear of abandonment.]
2. What information do you want your children to know, but you’re afraid to mention?
[Most denied there was any such topic – I now think the word “afraid” was too strong. But some secrets came to light. For instance, one parent added a child to all his financial accounts but has not told the other children. Note: Please talk to your lawyer about the possible legal effects of this before you do it. There are better ways to allow a child to take care of your bills.
Other “secrets”: A parent wants to leave more money to a child with greater needs, but hasn’t mentioned it to the other kids. Or parents worry about leaving money to a child whose spouse they don’t trust. One secret might be a parent’s desire to marry again.]
3. How do you feel about discussing your finances with your children?
[Again, some answered “No problem” or “They already know.” But see above. Some don’t want to reveal how little they have, for fear the children will feel burdened. Wealthier parents don’t want to reveal how much, because they may want to give a large amount to charity and don’t want the kids to feel entitled. If you’re uncomfortable sharing specifics, we recommend you at least put a list of all the information your kids will need – life insurance policies, safe deposit box number and key, bank account numbers, stock broker info, etc., in an easily found place.]
4. How much do you want your children involved in making your health care decisions?
[I suspect this was the toughest question for folks to think about, because it does imply helplessness. All three small groups put it off to last and never got to it. About half did have health care powers of attorneys and/or living wills. See Five Questions. ]
5. Where would you expect to be living later in your life?
[We were surprised that nobody said “With my child.” Most said they want to stay where they are. Some are in their own homes, others had moved to a senior community like Leisure World, still others are in independent living in a continuing care facility, which they like. Perhaps unrealistically, no one expects to be in a nursing home.]
6. What’s your deepest hope for the future?
[Most common answer: “That I keep my mind intact.” One woman touched us when she said, “If I become helpless, I hope I can accept that with grace. I hope I can find meaning in it.”]
Can you think of other questions? Write a comment and let us know.
A coming blog will share the questions and answered of the adults with living parents.
Carolyn Parr
When I mentioned to my friend Phyllis that my partner and I work with families who experience intergenerational issues around end of life, legacy and change of residence, she looked despairingly at me and said: “I don’t think you can help my family.”
She went on to tell me about her grandmother who at 86 lives alone on a small farm in South Carolina. Her grandmother refuses help of any kind from any of her family members. This ruggedly independent matriarch has lived alone for years. Despite a recent illness she won’t grant any of her adult children a health care or a financial power of attorney. Her will, if indeed she has one, remains a deep secret.
When I asked why, she replied that her grandmother believes that ”The Good Lord will provide.”
As admirable as her faith may be, it has become a source of frustration for other family members who fear what could happen if grandmother becomes helpless with no power of attorney, or dies with no will nor any other legal safeguards that can ensure that family members understand in advance her grandmother’s wishes. There’s also a need to reduce the chance of any misunderstandings among the siblings about who inherits what.
Phyllis said that her grandmother’s sister shared this philosophy. When she died, disputes arose among her children because there was no understanding of who was to receive what. Sadly the dispute became a court battle resulting in thousands of dollars in court costs and lawyers fees. Apparently Phyllis’ grandmother has chosen to ignore the painful and expensive outcome of relying only on the Good Lord.
Phyllis concluded her tale of woe by stating that nothing can change her grandmother’s attitude.
Have you experienced this with any of your family members? If you have and were able to encourage that family member to change his or her mind, write us. We can always learn from others’ experience.
Sig Cohen
At Tough Conversations we’re constantly looking for resources to inform us about end-of-life decision-making and support. A great resource is Five Wishes®, the “first living will that talks about your personal, emotional, and spiritual needs as well as your medical needs.” Like any document that deals with serious illness and end-of-life concerns, you should ideally discuss with family members before deciding whether to complete it.
Five Wishes® meets the legal requirements in 42 states and the District of Columbia and has helped millions of people plan for and receive the kind of care they want. Five Wishes® is unique among all other advance directives and living wills because it is user-friendly and easy to complete. It is available in 26 languages and in Braille.
Five Wishes® began when Jim Towey, Mother Teresa’s legal advisor, was working and living in her Washington, DC-based hospice. Mother Teresa’s life and work became the inspirational basis for the document, which has been called “the first living will with a heart and soul.”
Copies of Five Wishes® are available for $5 each (only $1 each in quantities of 25 or more) from Aging with Dignity, P.O. Box 1661, Tallahassee FL, visiting the website: www.agingwithdignity.org, or calling 888-5-WISHES. A national non-profit organization, Aging with Dignity’s mission is to affirm and safeguard the dignity of individuals as they age and to promote better care for those near the end of life.
We believe that the 12-page document has value for all of us. It contains a wealth of information regarding end of life treatment and support. Here is an abbreviated version of the document:
Wish 1: The Person I Want to Make Health Care Decisions for Me When I Can’t Make Them for Myself
Wish 2: My Wish for the Kind of Medical Treatment I Want or Don’t Want
Wish 3. My Wish for How Comfortable I Want to Be
Wish 4: My Wish For How I Want People to Treat Me
Wish 5: My Wish for What I Want My Loved Ones to Know
We hope you’ll look into Five Wishes® and consider whether and how it can assist you and your family members decide on how to best plan for end-of-life decision-making.
Sig Cohen