Category Archives: In Search of A Good Death

Stories and Ideas about creating a “good” end of life and dying experience

deathnotification

“Oh God!” she groaned, looking upward with tears flooding her cheeks, which were stretched into the shape of agony. Her chest heaved uncontrollably with grief.

“I am so very sorry,” I whispered again while leaning in and stroking her hand.

This is what death notification often looks like and feels like. We doctors should be masters of delivering some of the worst news that could ever be uttered, the worst news that could ever be heard. Continue reading

A “Sign” is defined as an object, quality or event whose presence indicates the probable presence of something else.

One day after having read, “Attending the Dying” by my friend Megory Anderson, I found myself at work in the ER. There was a half-naked psychotic lady screaming in the hall, the sound of a beeping ventilator alarm escaped from the curtained room of a man in respiratory failure, and a large crowd was gathering outside of Bed 2 because a matriarch was dying. Although I am accustomed to such visual and auditory chaos, it struck me that my dying patient and her family were not. Further, as I stood in this hall with the family whom I was attempting to shepherd along in creating a good death for their well-loved matriarch, I became acutely aware that I was not following the wise counsel set out by my friend, Megory.

In her brief and powerful tome, “Attending the Dying- A Handbook of Practical Guidelines”- Megory sagely advises those of us who accompany others on their journey towards last breaths. Standing in the bustle and roar of the ER, I could clearly recall her words regarding creating a sacred space for the dying and their loved ones:

“You have the calling and ability to set the stage for a good and holy death.”

“Creating sacred space is one of the first steps in setting the environment apart from day-to-day issues, which in turn helps everyone present remember the sacredness of the event unfolding.”

“Contain or mark the space.”

“Try to make this an intimate experience for the family, within the boundaries of the medical unit.”

“A sign on the door is always appropriate.”

Hmm…I thought, “What I really need is a sign. But what would it say?”

I mused that my favorite sign would go something like this:

“Shut up! Can’t you see that someone is dying in here?”

Being known for my public decorum, however, I decided against this one. But, what?

I could not imagine the family wanting a sign on the door that overtly stated that someone was dying. This would rob them of some of the privacy that I was hoping to create.

I could not come up with anything decent and reasonable on my own so I turned to the experts. In my ER, we have these fabulous humans called “Patient/Family Representatives” whose job is to socially, emotionally and spiritually help support and gain resources for people who are critically ill or dying. If ever there was a font of wisdom, these people are it! So, I presented the idea to them and of course they had the solution and here it is:

quiet please

Ah, now there we go.

This sign promotes respect and privacy without announcing the condition of the patient.

Brilliant!

So, I shared this on twitter and got this interesting response.

Love it! But this has to be “branded” or a commonly understood symbol for uninformed people to understand the message, or this funny response might be the product:

Ha!

So the point is that indeed a sign is often a necessary, simple and powerful tool in defining a sacred space for the dying, particularly in a medical facility. But remember, when creating YOUR OWN signs for this purpose: A “Sign” is defined as an object, quality or event whose presence indicates the probable presence of something else. You have to understand the sign to obey it!

Make sure your sign is recognizable, respectful, and gets the job done.

Thank you, Megory, for teaching us how to better attend the dying and to groom the environment practically and with dignity, even within the chaos of the ER.

*****

To learn more about Megory Anderson’s work visit the Sacred Dying Facebook page

Dr. Megory Anderson was called to a vigil at the bedside of a friend who was dying one night. That experience was so powerful that she began working with others who needed help attending to those who were dying. Today, Anderson is the executive director of the Sacred Dying Foundation in San Francisco, and trains others in the art of “vigiling,” a way of attending to the needs of the dying. She may be reached at: Megory@sacreddying.org

I have a very wise nurse-friend, we call her “Coop.” I have always thought that she double-dipped from the fountain of compassion. This paper, which she wrote for a Nursing 403 class, proves my suspicions true and gives us all a clue on how to become more like her. This lesson is applicable to ALL of us who care for and serve others, not just those called to nursing: Continue reading

It’s Personal… by Michael Fratkin, MD

Friday, 21 Nov 2014 20:13

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When we hear that we have a terrible illness that will shorten our life, it’s personal.  When we learn about the benefits and trade-offs of the tests and procedures that will decide what treatments and medicines may help us, it’s personal.   As we make our way through side effects, complications, insurance plans, phone calls, waiting rooms, pharmacies, labs, radiology departments, billing departments, emergency rooms, intensive care units, medical jargon, bad news, good news, family conflict, family meetings, caregivers, nursing homes, physical therapy, occupational therapy, speech therapy, psychotherapy, medication lists, medication interactions, medication errors, advance directives, wills, and the many losses, it’s personal. Continue reading

Most of the time I feel as though I am “running in quicksand” attempting to bring patients to a place of grace and dignity in dying. On occasion, there is someone who jerks me out of my quicksand and plants me squarely on stable shore and then proceeds to show me what grace and dignity in the face of death really look and feel like.

Please meet Mr. Jefferson. Continue reading

#YOLO and #YODO! by Monica Williams-Murphy, MD

Saturday, 16 Aug 2014 16:50

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I recently got back from an exciting vacation which included zip-lining and whitewater rafting. Repeatedly during this trip, my oldest daughter and I would encourage each other with the trendy term “#YOLO“-“you only live once,”  before we did something that felt  risky but adventurous. (No offense to my Hindu and Buddhist friends who might prefer another acronym such as “you only live as many times as you need to get it right”! #yolamtayntgir (Sorry…not terribly catchy guys!) Continue reading

Father's Day- Tim and Darcy

The name of my book is “Bitter and Sweet, A Family’s Journey with Cancer.” Here is a brief summary. In April of 2010, my husband Tim began to have some strange sensations in his side. On May 7, we found ourselves facing stage IV gallbladder cancer rather than a simple gallbladder removal as planned. Five months and one week later, my husband died. Those five months were the most difficult and horrifying time of our lives. It was also an extremely beautiful time for us. We found ourselves using the phrase “bitter and sweet” so often during those five months, that it was an obvious title choice. What follows is the short version of our story…

~~~~~~~

Our lives had been full of paradoxes. How do you fight for your life and yet accept mortality at the same time? How do you maintain optimism, which is necessary for health, and prepare for your death and get your affairs in order? How do you understand God’s love and compassion, and yet experience cancer and suffering? Continue reading

If one were to plot a person’s life on a number line, then death would be nothing more than an infinitesimally thin point, nothing more than a nanosecond demarcation from one state of being to another state of being. So why is it that some of us fight death with our last full measure while others embrace it like a new born baby? 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
Master Teacher

Access FREE Tips from the Mini-Course Mastering The Listening Self: Personal Growth Through End-of-Life Encounters

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