Everyone suffers when communication fails at the end of life. Though we may “know in our hearts” what to do in difficult situations; anxiety and bias close us down. We lose our ability to say and act on what we know is best.
Physicians and nurses suffer when they “know in their hearts” that they are doing harm performing CPR on people at a natural end of their lives on people whose bodies can do nothing more than suffer and wherein all medical moves lead to more suffering and the patient dies anyway.
Families hurt when asked to make decisions in an unfamiliar setting, when they are paralyzed with anticipatory grief, and left without a roadmap and information that could help them understand their range of choices.
Patients suffer immeasurably when their last days are filled with probes and prods, jabs and shatters beyond anything they ever would have wanted to survive.
Who would choose that? Nurses and doctors want to help, care and comfort. Families want health professionals to help them verbalize what they “know in their hearts” and help them make choices that they can be at peace with. Patients certainly want dignity, care and comfort for the end of their lives; even if they can’t say so or didn’t document it in an advance directive…they want dignity, care and comfort.
At the end of life, most of us want to spend time together with loved ones in our last days and weeks; not in a hospital room, filled with 8 other people hanging bags of blood and monitoring machines. We simply want to say what needs saying and do what needs doing before we breathe our last.
But people don’t get what they want. Palliative care conferences and hospice referrals are made way late to provide the benefits that are possible and way fewer people than are eligible and who would benefit by those services get them.
What would it be like if doctors and nurses knew how to guide effective end-of-life conversations that help people to get what they want and be at peace? What if these conversations didn’t have to be emotionally draining, interpersonally complex or time consuming? And what if this were possible by going with the awareness of what we “know in our hearts” to guide these conversations? Here’s a true story of a conversation like that:
When I was a hospice director, there was a new admission and other nurses were busy, so I visited the 80-year-old man and his dying wife. The referring hospital and physician called hospice but had not told the husband and wife what to expect. No words on the patient’s prognosis.
The husband met me at the door, wringing his hands and asking, “Is she going to be okay?” “Well, let’s go see.” I said, still standing on the front porch. He led me to his wife’s bedside at the other end of the neat, warm and cozy living room. She was sleeping deeply and appeared comfortable in a hospital bed set up there earlier that day.
While observing the resting patient, my practiced senses told me that she would live at least another few days or maybe a week if the disease took its normal course. Experience also told me that the husband ‘knew’ that his wife was dying. But no one had helped him to access that knowing yet.
So, after a silent moment or two, I looked at him and said, “You have been married to your wife for a long time. You know her better than anyone. When you look at her now, how do you think she is?”
He immediately dropped his head and said, “It’s not very good.” I retuned, “That’s right.”
Now that he had stated what he knew, he could be at rest and receive information about what to expect and how to handle the upcoming days.
“She’s not going to live as long as we would like, but you have some time yet.” I reassured him.
There we had it. He now knew cognitively what he already knew in his heart. Now he could act on that awareness and take the time he had left to do things he wanted to do and say what he wanted to say before his wife died. Now he could attend to her with keen awareness that these were the last days of their lives together.
Without that, he would have missed opportunities to deal with reality while hoping for a miracle that was never going to appear.
That conversation didn’t take long, and it can happen in an Emergency Room as well as in a home. I knew the patient was dying. He knew his wife was dying. She knew she was dying (patients who are dying know that). Acknowledging that opened up all kinds of possibilities that this man, his wife and their friends and family could get and give what they wanted in those last days.
Here’s another true story. This time I’m not a hospice nurse but a wife, soon to be widowed:
Both Josh, 60 and I, 53 knew that he didn’t have “6 months to live,” though that’s what the first doctor told us. And I knew he didn’t have “weeks to live,” though that is what another doctor said. Doctors kept telling us we had more time than we did. We had 17 days from diagnosis to death.
Thanks to my hospice experience and sheer will, I got what we needed to have a good death at home, spending time with our children, sleeping together, time gathering with family and friends.
But I didn’t get what we needed from the best docs in town. I got it myself by calling hospice while a physician who thought I was jumping the gun admonished me for it. Really? I wasn’t riding a white horse. I was just trying to get our needs for information and comfort met.
But when at 2:00 a.m., an ER nurse who happened to also be a former nursing student of mine, caught glimpse of us after we had waited 4 hours in ER for a room upstairs; she wheeled his bed upstairs while friends and I, carrying cake pans full of medication, followed.
Then that sweet nurse disappeared. And the chaplain she had called for me appeared. He prayed beside me in the hall way while the hospital staff got Josh settled in his room. Then I began weeping from deep within. A grief I will never forget and never know exactly that way again. Writing the story today, 5 years later, the weeping returns.
The physicians knew he was dying. I saw a young hospitalists crying in the charting office outside Josh’s room just after she had visited him. She knew he was dying. Must have been heart broken to see him and me, and to know that we had but a few days. But she never talked to us about it.
On what basis do we keep what we know from patients and families? On what basis do we deny families and their dying members the many things that they would do differently and better? On what basis, do we sacrifice the living we could do today for the hope that tomorrow we won’t have to face death?
Many things families would do never get done at all because they just don’t understand the time constraints under which they are living – and no one helps them access their awareness of what they already know deep down.
Had we been in the hospice program earlier, had someone acknowledged what we already knew, or had someone asked and listened to us, we would have had more than 7 of our last 17 days at home with hospice.
We got to celebrate our 10th wedding anniversary at home though. Josh was comatose by then but the pastor who performed our ceremony a decade before came over to hear us renew our vows. Mary, our Matron of Honor brought a rose, which I laid across Josh’s chest. A few friends also attended. I read aloud Josh’s vows to me and mine to him. He died 2 days later.
Because I’m an experienced hospice nurse, a researcher and a family member, I am profoundly aware that most people already know the truth of the matter when it comes to a natural end of life; and I know that it takes only a short conversation for clinicians and patients and families to get on the same page.
Research tells it to us too. But everybody knows it’s true, we don’t need science or stories to know what we know. We just know it. What we don’t know is how to go about talking about it.
So what does it take to have successful end of life conversations? Conversations guided by what everyone already knows in their hearts, conversations that get more of what everyone wants?
Begin by reminding yourself that we all know what’s going on. If you think that your time and ideas are worth more than the patient’s, you’re not ready to talk about death and dying.
Be sure that you have quieted your mind before you approach the people you are attending. Being-with patients and families in these conversations requires a spacious inner silence, which creates spaciousness for them. We breathe the atmosphere, so to speak.
Know that your patient and family already have an awareness of what’s right for them, but they need your support and quiet presence to access it. Their awareness will arise as a ‘sense’ of knowing. That’s what you want to learn from them.
Be mindful that what you are doing is asking questions that allow family and patient to access their awareness of what is true for them.
Open ended questions work. “What do you think is going on when you see your mom?” Or “What’s most important to you right now?” are good questions.
Don’t worry about what question to ask. The right things to say will arise in your mind if your intention is to only understand what they know in their hearts.
Once you’ve asked a question. Be quiet and ‘wait’ for their answer. If you have that inner silence already, this will be easy. It may be more than a few seconds for them to come up with the answer.
They may have questions. Answer truthfully from what you know in your heart.
When everyone is on the same page, you’ll know it and then action can be taken and people can be at peace.
Practice all of this in non-threatening situations.
Make rounds with a colleague who already knows how to do this well.
Remember, this doesn’t take as long as we may imagine. Even in complicated situations with multiple family members, you can come to an understanding in less than a half an hour.
Sample illustrating a powerful, warp speed encounter:
Daughter to Hospice Nurse: I live in Milwaukee and I’ve been with Dad in New Glarus for a week now. Should I stay or go home?
Hospice Nurse: Well have you asked your Dad about what he thinks about that?
Daughter: No. How do I do that?
Hospice Nurse: When he wakes up from his nap, tell him that you’re thinking about going home and ask him what he thinks about that.
Daughter to Dad: Dad I’m thinking about going home. What you think about that?
Dad to Daughter: You stay. I’m going…
Take Away Message:
Why would we sacrifice a day in someone’s end-of-life for a presumed better tomorrow? Let’s stop pretending we don’t know what to say and do in end-of-life situations. Let’s begin asking about, and telling what we “know in our hearts.” If we do, everyone will be happier and we probably won’t mind minimizing Medicare payments for unwanted treatments and private medical bills for someone else to pay either!
Virginia L. Seno is founder of the Esse Institute.