(If you are not religious or are atheist, please do not be dissuaded from reading this article by the title:)
We just had a member of our congregation die relatively unexpectedly. He was in his early 50s and a father of 6. (That’s a big equation.)
My religious job is to teach our youth (teenager) Sunday School class, when I am not working in the ER or traveling to lecture. So, in this regard, today was like most other Sundays- I had gotten up early to prepare my lesson for the day. The problem was, the lesson wasn’t relevant for the day…meaning the death of this man was on everyone’s mind, and two of his children were in my class. Continue reading
I sat in silence wrestling with myself, shifting in my seat, as my husband drove down the road. He pointed out some beautiful fall foliage. I looked at the trees but could not appreciate the scenery due to my turmoil. All I could think about was how uncomfortable I was with my father’s hospital discharge plan and how fractured end of life healthcare planning is in some states (specifically, states without a POLST form), states such as mine, Alabama. Since becoming active in advocating for better end of life healthcare planning, I have been a supporter of the POLST for lots of obvious reasons- but most basically, it ensures that the medical system obeys the wishes of the patient or the acting healthcare proxy. I have known abstractly how important such a document is for my patients. But now, a new personal knowledge is dawning for me—I now know firsthand how the LACK of a POLST or POLST-like document actually LIMITS healthcare options for those who are near the end of life! Continue reading
If you don’t like the way the world is, you change it.
You have the obligation to change it.
You just do it one step at a time.
— Marian Wright Edelman
He looked dead. The paramedics brought him down the hall toward one of my critical care beds, and for a moment I thought the patient was dead. He was nearly the same color as the pale sheet covering his thin frame. His cheeks were sunken in and his eyes were gazing upward, in what I sometimes call the “death stare.” Then, surprisingly, he moved his arm upward to push his oxygen mask off of his face, resting it atop his head like one would wear a pair of glasses not in use. Continue reading
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 eight 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 get what they want and be at peace? What if these conversations didn’t have to be emotionally draining, inter-personally 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 returned, “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 “six 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 four 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 hallway 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, five years later, the weeping returns.
The physicians knew he was dying. I saw a young hospitalist crying in the charting office outside Josh’s room just after she had visited him. She knew he was dying. Must have been heartbroken 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 seven of our last seventeen days at home with hospice.
We got to celebrate our tenth 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 two 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 quesitons.
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 do you think about that?
Dad to Daughter: You stay. I’m going…
by Dr. Virginia L. Seno
Founder, Esse Institute LLC
Rotary International Paul Harris Fellow
End-of-Life Communication Expert
End-of-Life Nursing Education Consortium (ELNEC) Trainer
Access FREE Tips from the Mini-Course Mastering The Listening Self: Personal Growth Through End-of-Life Encounters
We never know how high we are
Till we are called to rise.
It could be suggested that the “good death” is falsely named in the field of thanatology and in the popular press. It implies an ideal state, one which of course, we cannot have. Never agonize over ideals when the problem is as urgent as death. Perhaps it should be renamed “the good-enough death,” one that is sufficient and satisfactory to both the dying person and the caregiver. It is the best that can be achieved at that time, in that place, by those people, with that problem, in their particular situation. Maya Angelou was right to say, “You did then what you knew how to do, and when you know better, you will do better.” Death and dying are extremely personal. Continue reading
(Editor’s Note: Dr. Kella’s story reflects my own personal journey as an Emergency Physician. All conscientious healthcare providers eventually come to a patient who transforms the way they practice. The lesson in Dr. Kella’s story is especially important for those of us who practice in the Emergency Department, where we set the expectations for our patients and families, and we set the course of care with the therapies that we initiate (or not). It is within our power to change the destinies of those whom we serve, to relieve and prevent their suffering, instead of allowing and creating more.- Monica Williams-Murphy, MD)
When I graduated residency and started my first job, I walked around the ED confidently, chest slightly pumped up at all times. I knew I was well-trained. If there was a sick patient, I was going to resuscitate them. If there was an impossible central line that was needed – I was going to get it. Difficult intubation? No problem. There was no procedure that was too difficult for me. Continue reading
Listen in as we discuss: personal stories of dying loved ones, why you should not show up to the ER without an advance directive, reasons that Americans avoid conversations about death, how the Declaration of Independence is relevant to end of life discussions, how to have a “good death”….and much, much more…
In 1918, if your little brother died in the influenza epidemic, it’s likely that you would have cared for him as he died, at home, and after he died, at home.
In the early 1900s, my grandmother helped care for her own mother in her own home, as she died of cancer. After she died, the family built a coffin and buried her.
This has been the normal pattern of dying and after-death care for all of human history until very recently, as death has become transformed into a life-cyle event which is managed by specialists. Continue reading
“When people talk, great things happen.”
As a society in general, we Americans seem to prefer “doing” rather than “being.” When someone dies, we feel that we have to “do” something for the bereaved, not “be” something. Wait: think. Just sit and listen. That’s better. That’s “being.” The gift of self is greater than the effort to act. Action too often minimizes the grief of the bereaved. It surrenders to an impulse to turn away from death and grief pain. It tends to deny death. Doing tends to minimize grief and maximize denial. Continue reading
Many years ago when I was a “young” doctor, moonlighting in the ER of a tiny country town, I had an experience that challenged my training. You see, most “young”, “new” doctors often think their training and knowledge is superior to that of “old” doctors…which is often…malarkey! A wise and sage “old” doctor in this tiny country town taught me an important lesson on where and how one should die. Continue reading