You have introduced the idea of having a family conversation, or a series of conversations, about end-of-life wishes and goals. Mom and Dad are on board, the adult children want to know more, and everyone is ready to take the next steps to ensure wishes are followed. Now what?
This can be difficult emotional terrain, but having the conversation now, at a place and time of your choosing and while your loved ones can speak for themselves, is vastly preferable to trying to interpret goals and wishes when someone is unable to speak, when the family is in crisis, or in a hospital intensive care unit...
A few simple guidelines can get the conversation going. There are many resources, listed at the bottom, that can help guide your conversation in detail and serve as a checklist to make sure you address and act on next steps.
1. Many Voices
Some families like to begin with individual conversations -- one-on-one with each adult child, for example, or a separate conversation with Mom and then with Dad. This is a good way to get the conversation started. Make sure to share the fruits of these conversations with the rest of the family
Others prefer a family meeting style for important conversations. Ideally, everyone convenes in the same place to ensure each family member hears the same thing at the same time, gets the chance to voice his or her opinion and to respond to others.
2. The Setting (Consider the Kitchen Table)
Whether you are having a one-on-one talk or convening a family meeting, make sure you have enough time and space to carry on a thorough conversation uninterrupted. Individual conversations may take place over a cup of tea, on a walk, or an unhurried drive in the country. My friend Beth had the conversation with her mother on a summer visit while they sat at the table shucking corn. By sitting down over a task, the two opened up space for a conversation that might not have happened on the go, especially between the needs of Beth's two small children and her father's health needs.
Consider having a conversation over or following a ritual dinner, such as Thanksgiving or the Passover seder (particularly if your family is given to including reflections as part of the evening). My colleague Cheryl Avellanet, RN, a nurse with the Visiting Nurse Service of New York, recently had a vital end-of-life conversation with her brother while they were sitting at the kitchen table. "For my family," she says, "everything seems to happen at the kitchen table."
3. Draw on Previous Experience
Most people have no prior experience with their own end-of-life chapter. But live long enough, and most of us have experience with a friend or family member's dying. This may include a so-called good death, in which a loved one's wishes were followed to the end, or a death that was particularly difficult, painful, prolonged or left a great deal of unresolved feelings in its wake.
For your conversation, draw on past experiences to help articulate what you, or your loved one, would want -- and would want to avoid. My friend Beth learned that her mother had formed clear-eyed goals for herself based on two polar opposite family deaths more than a decade ago. "My mother recalled how her own mother had died with dementia, in her 90s, taking no medication, at home and surrounded by those who loved her, " Beth says. "My mom contrasted that to how her mother-in-law died, also with dementia complicated by several heart bypass surgeries, in the hospital, following resuscitation attempts that caused broken ribs and prolonged her agony. From that, my mother determined that she didn't want extreme measures when her time came."
4. Be Specific
Ask -- and answer -- questions as specifically as possible. A guiding question is: How do you want to live your life at the end of your life? One patient told me that she wanted to "die consciously." She would tolerate the pain, she said, in order to be present in the moment with her family. Other patients prefer to be pain-free, even if that means sedation. Cheryl enumerates the detailed answers she elicited from her brother, which will help her help him should he lose capacity to speak for himself. "I said, 'I hope these questions don't make you uncomfortable, but I want to understand better what you want,'" she says. "I asked very specific questions: When, if at all, would you accept a feeding tube? How about a ventilator? How long would you accept being on a ventilator? What if the doctors felt it was unlikely you would be able to give your grandchild advice on what courses to take in college."
"Believe me," Cheryl adds, "difficult as the conversation is, it is so much easier than having at a time when someone is imminently dying."
5. Who Speaks for Me?
Who would you like to speak for you if you cannot speak for yourself? This is the health-care proxy, also known as power of attorney for health care -- the person designated to make medical decisions for you should you become unable to communicate your wishes. The conversation, or conversations, should involve the selection of a health-care proxy, letting the proxy (and others) know your wishes and putting them in writing (which New Yorkers can do with this form).
Beth's mother had been prepared to name her youngest son as her health-care proxy, since he was a health-care lawyer. But during the family conversation, the mother found that Beth communicated more openly about difficult emotional issues, while the younger brother shut down. So her mother decided that Beth would be better able to speak for her and communicate with the family and care team if she became unable to speak for herself.
6. Put It in Writing
The best way to ensure that your or your parents' wishes will be followed is by committing those wishes to writing. There are a number of online resources that can guide you in this endeavor.
7. Continue the Conversation
This is only the beginning of this vital family dialogue, but the first steps are often the hardest. Revisit the topic periodically -- perhaps each Thanksgiving -- to see if wishes have changed and make sure those wishes are updated in writing.
Useful Resources
There are a number of excellent resources to help you structure and guide your conversation, enumerating your options and prompting important questions and next steps. One of the most comprehensive and user-friendly places to begin is the Conversation Project, a new website started by Pulitzer Prize-winning columnist Ellen Goodman. The site contains a downloadable "starter kit" to help direct you through the conversation.
The Center for Practical Bioethics' Caring Conversation workbook is a thorough guide directing you to reflect on your personal values and goals, talk to the person you are considering as your proxy, appoint that person, and act on your decisions. The American Bar Association's Commission on Law and Aging also has a toolkit for health-care advance planning.
Other resources include:
•More on end-of-life care and caring for aging parents from the Visiting Nurse Service of New York
•Five Wishes, a new way to structure the conversation
•Advance health-care planning in New York State
•Start the Conversation, compiled by the Vermont Assembly of Home Health and Hospice Agencies.
•State-by-state guide to advance directives (and downloadable forms)
Down the Road
In my next post, I will explore having end-of-life conversations -- most often held along with your health-care team -- after a loved one has been diagnosed with a serious, life-limiting illness, and how you as a family member can prepare yourself for and participate most meaningfully in those conversations.
For more by Jeanne Dennis, click here.
For more on death and dying, click here.