The Changeable Meaning of "Do Everything"
In the final stages of congestive heart failure, Bart Andrews lay in bed, minimally responsive and gasping for breath. He was surrounded by his adult children, whose conversation kept returning to the refrain, "We want everything done for him."
Mary Winters, RN, one of my colleagues at the Visiting Nurse Service of New York's Hospice and Palliative Care Program, was in the room for a first visit. One of her great skills -- and a core competency for any care provider who works with people at the end of life -- is listening.
As the conversation unfolded, the adult children told years-old stories of when their mother died. "'I remember Dad saying he didn't want to be hooked up to a tube, or a ventilator, like Mom was,'" Mary quotes one of the children as saying. Then, one by one, the others voiced similar memories.
"They needed time to explore," says Mary. "An important part of any family conversation is to understand what is meant by 'do everything.'" Does it mean surgery, feeding tube, ventilator, or does it mean pain medication, oxygen, antibiotics if necessary, and other measures aimed at comfort and quality of life?
Eventually, and in dialogue with the care team, the family agreed that their father would not want a ventilator. The goals of care then shifted to making him comfortable in his final days. It was only through the good, hard work of family conversations that consensus was reached by all involved about the best course to follow in an incredibly difficult situation.
Difficult Conversations, Difficult Time
In previous posts, I've discussed the importance of having end-of-life conversations in the midst of life, before a medical crisis. In this post, I'd like to explore the necessity, challenges and goals of having those conversations once the diagnosis of a life-limiting condition is confirmed.
Conversations before and after a crisis have much in common, such as the need for specificity, openness, honesty, and full family participation, although there are differences. For one, conversations following diagnosis usually include members of the care team: Doctors, nurses, social workers, hospice or palliative care clinicians often typically center on the question, "What are the goals of care?"
Drawing from my own and my colleagues' decades of experience guiding end-of-life conversations, as well as from such industry standards as Robert Buckman's book How to Break Bad News and a care team protocol called SPIKES (Setting, Perception, Invitation, Knowledge, Emotions and Strategy), I outline below how you and your family -- along with your care team -- might get this most important conversation underway.
1. Make sure the right people are assembled.
Make sure the care team sets aside enough time and the right place for a reflective, in-depth conversation in a secure and quiet space. The care team should give you at least 45 minutes or an hour, and everyone should have a place to sit.
Decide who should be in the room (and who, if anyone, should not), and try to arrange a time when everyone can be present. If this proves difficult, at least make sure key decision-makers are present. If the eldest son of the family, who has the power of attorney and is the de facto family spokesman, has to work late, postpone the meeting until he can be present. If the daughter who lives 10 minutes from mom and does most of the caregiving has to be at a piano recital, reschedule the meeting.
Let everyone express his or her thoughts, no interruptions.
The overriding goal of this and continuing conversations is to get everyone on the same page in the patient's interest. If that cannot be done, whoever is designated as health care proxy has the last word, but remember: You have to live with the consequences of those decisions. So make sure everyone's voice is heard.
2. Make sure everyone is clear about the medical condition.
As end-of-life care practitioners, we often begin by asking the patient and the family members to describe the illness at hand -- as they see it. The goal is to make sure the patient and family share an understanding about the current state and expected course of the illness, and that this understanding matches that of the care team. Knowledge, after all, is power, and is vital to informing the "goals of care" conversation.
From the care team's perspective, this step is not about explaining the diagnosis in technical terms as much as it is about listening. "I always allow for silence," says Mary, "and wait for questions."
Often we find there is a discrepancy between what doctors have said and what patients have heard. "I'm sure I can get stronger," we hear many patients say. "They just have to give me something to help me eat more, and I'll get stronger." Cheryl Avellanet, RN, VNSNY Hospice and Palliative liaison to Mount Sinai Medical Center, says she responds to the hope -- "I hope that will happen, too" -- but also speaks to the reality, saying, "At this point, the chemotherapy is not working as we had hoped and the tumor is still growing."
Cheryl aims to be gentle but persuasive and, over time, shift the conversation to the here and now. She says, "What if, in spite of your being so strong and doing so much, the cure does not happen? What is most important to you?" Then, she says, patients begin to talk about end-of-life goals, such as being comfortable or making sure a spouse has support.
3. Discuss goals and hopes.
Once the patient, family and care team share a common understanding of the current medical condition, the next question is: "Given all this, what are your hopes and goals, for yourself and your family?"
Some people want to fight the illness with all they've got, take any extreme protocol, travel to any country for treatment. On the other end of the spectrum, some people want to avoid the hospital at all costs and let nature take its course. We recently cared for a retired police officer diagnosed with advanced prostate cancer, who said, "I don't want to suffer. I don't want any pain. I just want to stay home with my beautiful wife of 70 years and be taken care of."
Most people are in the middle of this wide spectrum, and it is our job as end-of-life caregivers to ask questions, listen to answers and help the patient and family structure their decisions based on their own values. Some people are more comfortable speaking about clinical goals, wanting to be comfortable and pain free, or, as a patient once told me, wanting to be "present" and avoiding sedating pain medications. Others prefer to talk about life goals, such as spending more time with grandchildren, getting outside to the park every day, or evaluating their life's "bucket list" for final trips and projects.
4. Honor those who can no longer speak for themselves.
For patients who can no longer speak for themselves, we begin by asking the family members what they know of their loved one's wishes. "What did she say about where she wanted to be, at home or the hospital? About what she wanted done, from everything to nothing to somewhere in the middle? About what kind of care she wanted to avoid (as in Mr. Andrew's case in the example above)?"
This is why, as I have written in previous posts, it is so incredibly valuable to have end-of-life conversations earlier rather than later. "It's so liberating for the families who've had previous discussions," Mary explains. "I say, 'What has your mother said to you in past about how she wants to be treated?' or, 'Has anyone else in the family had this experience, and what did she say then?'" Often, Mary says, they respond as Bart Andrews' family did: "She said, 'I never wanted to be like that.'"
Even if a family has not held a formal end-of-life conversation, they may well have heard their loved one express thoughts in passing or at particular life junctures, such as before major surgery or while experiencing a death of a loved one.
I was struck while reading Michael Wolff's heart-wrenching article about his mother's end-of-life journey in New York magazine (a must-read for anyone who has a parent, is a parent or knows a parent) by the acknowledgement that the author and his well-meaning siblings did not listen to their mother when a cardiac surgeon wanted to repair a worsening heart condition, something that fixed her heart but did nothing to stem her advancing dementia. "Her wishes have always been properly expressed, volubly and in writing," he writes. "She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist -- sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen -- but of course who listens to a woman who scribbles such notes?"
5. Determine the level of information you and your family want.
Finding the right level of detail for the conversation is a choreography between the care team and the family. Some families, Mary finds, want statistics and extremely detailed accounts of prognosis. Others say, "I trust you, do what you think is best." Or, "What would you do if it were your mother?" And still others may defer to certain cultural traditions, such as some Asian parents who say, "I don't want to know, tell my son."
Bart Andrews' family, sophisticated adult children who were working professionals, wanted to know statistics, such as, "What percentage of patients with this condition ever come off the ventilator once they are put on it?" (Answer: A miniscule percentage.)
"Know your audience," Mary advises caregivers. "Know how much detail they want. It helps everyone in the long run."
6. Keep the conversation going.
Now is not the time to hold back. Communication is the key to understanding, and mutual understanding leaves little room for regret.
And keep in mind that there are other ways to communicate if words fail, as they often do when someone is in the final days or weeks. VNSNY Hospice Social worker Stephen Borow is currently living through the experience himself, with his own elderly parents both in hospice care. On a recent visit, Stephen's father was crushed because his mother, who suffers from dementia, did not appear to recognize him. "I put their hands together," says Stephen. "He went quiet, and she went quiet. There are ways of finding connections, even if it's not with words."
Sometimes, that's how the conversation continues.
Have you recently had an end-of-life conversation with a loved one in the final stages? How did you begin the conversation? What were your challenges and/or solutions? Let us know, so we can keep this important conversation going.
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