It’s Time to Talk About Death- An excellent op-ed piece from the NY Times march 28, 2020 from Dr. Sunita Puri

:

LOS ANGELES — Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.

I cannot sit with Joseph’s wife and children to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue as they cry. Now, because of the coronavirus, most hospitals don’t allow families to visit. Instead, I met Joseph’s wife and children on a Zoom conference call.

“I want to apologize to you for being a face on a screen,” I began. “I wish we could talk about this in person.”

They nodded together, their eyebrows furrowed.

“I wish that I had better news to share,” I said. “Unfortunately, despite our very best efforts to support Joseph’s heart, lungs and kidneys, his body is showing us that he is getting sicker.” I watched, disembodied from a distance, as they hugged each other and cried.

His wife told me that Joseph had never talked with her about what he would want in this sort of situation. “I don’t know what he would say,” she said. “We didn’t think this would ever happen.”

Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.

In Italy, doctors have had to make excruciating decisions about which patients receive ventilators, which are in short supply. In the United States, we are already facing shortages of life-sustaining therapies; doctors will need to make these same difficult decisions.

Our collective silence about death, suffering and mortality places a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes.

Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.

Here’s how I opened a conversation about death with my own parents earlier this month: “Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”

“If I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would help me stay independent,” my mother replied.

My father nodded in agreement. “My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me,” my father told me, stirring his tea.

Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a patient’s brother told her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial. In the fall, I walked the wife of a patient into her husband’s hospital room, where they renewed their wedding vows amid cake, balloons and glittery confetti.

“This was what she always wanted,” he told me when we discussed what was most important to him. “I put it off for so long, but I have to do it before I die.”

Working in the hospital with patients suffering from the coronavirus made me ask myself the questions I hope you will ask yourselves and the people you love:

1. ·       What is most important to me in my life? (My family and pets, and the ability to write and doctor).
2. ·       What makes my life meaningful? (My work; dancing; being outdoors; being with my loved ones).
3. ·       What sort of quality of life would be unacceptable to me? (Being permanently bed-bound or neurologically devastated; indignity and suffering; depending on others for personal care).
4. ·       Who is best positioned to speak on my behalf? (My brother).
5. ·       Who would I not want involved in decision making? (Family living abroad).
6. ·       Would I want to undergo C.P.R. should my heart stop? (Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I’d prefer to die peacefully rather than with C.P.R.).
7. ·       What would bring me comfort if I were hospitalized? (Pictures of my family; music I love playing in my room; prayer).

This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations. The Serious Illness Conversation Guide gives health care providers a road map of when and how to start asking patients about dying. Both resources offer the compassionate, incisive — and often unfamiliar — language required for us to ask the right questions and empower our loved ones to share specific, honest answers.

Confronting our fears about death — having a conversation about it in frank terms — can be alternately terrifying and tender. Yet knowing how to honor our loved ones’ wishes when they can’t speak for themselves is one of the bravest and most loving things we can do. 

Care for Everyone at the End of Life

There has been a great deal of anxiety being expressed recently about end of life care. In newspaper articles and blogs, people wonder if health care reform will lead to limiting care, leading to euthanasia for old people the weak and impaired. Much of this type of news instills fear in those who are elderly or infirm, and in their families. Given the state of health care in this country, the information and the fear are both misguided and misplaced.

Sick people who are dying are usually cared for in a hospital, and hospital care is expensive. As long as people are fighting their illnesses, they will be in hospitals at the end of life, and it will be expensive even if they die anyway.

The problem with today’s health care system and any proposed system that I have seen is that we focus too much on the health care and not enough on the patient’s desires and quality of life.

The question that you should be asking, as a patient or potential patient, if you are old and infirm, if you are in the late stages of cancer, or just thinking ahead is, “If I am going to die (from this illness), how and where do I want to die?”

This might seem an odd question, but it is one well worth contemplating. Everyone is going to die. Many people don’t have a chance to plan for it, but some do. It would be a shame to waste the opportunity if you have the chance. How can you tell? When the doctors tell you that “the situation is very serious,” that there is “not much more” that they can do, that you should “reconsider” whether you want aggressive testing and treatments, then they are trying to give you a hint. It is time to start listening and thinking about it. Don’t ignore the opportunity.

Do you want to die in a hospital bed, surrounded by machines and nurses and doctors and technicians, where your family has limited visiting opportunities and can hardly get to the bedside, or, do you want to die at home (or in a home like atmosphere) surrounded by friends and family and with only enough care givers to make everyone comfortable with the process?

My aunt was diagnosed with pancreatic cancer. She was 70 years old and had chronic lung disease from smoking. She chose to try curative surgery even though it only works 5% of the time. She spent the last month of her life in the intensive care unit. She never got off the respirator after surgery. She never woke up. If she had not had surgery, she could have lived another 3 to 6 months awake and with her family.

A patient had a spot on his lung. He was 80 years old and not very healthy. He could have just ignored it, but he chose to have an open biopsy done by a specialist in another city. He developed pneumonia and died after the procedure. The spot may have even been benign, and he could have lived several more years. 

Sometimes the choice for medical tests and treatment is the wrong choice. There is an intriguing study showing that some patients with terminal disease who choose Hospice care - that is end-of-life, non-aggressive, palliative care - actually live longer than patients who choose to continue receiving medical treatment for similar conditions. They lived an average of 29 days longer! I think that many doctors are not surprised by this, but patients are.

There are some very famous people who chose to die at home. The late Pope John Paul II died, “in his residence.” I am not sure what that means exactly, but CNN reported that “despite his precarious health, the pope had decided to remain in his residence at the Vatican, rather than returning to Gemelli hospital in Rome.” To me, it means that the Pope, who had been in “precarious health” made the decision, again according to CNN,  not to have aggressive medical care at the end of his life “after his heart and kidneys started to fail in the wake of a urinary tract infection.” Does this mean he “chose death” as some would say? I don’t know, and I can’t ask him, but I would say he chose peace rather than war; he chose to accept his fate as a mortal human being rather than struggle against it.

Another advocate of death at home was Jackie Onassis. According to the May 1994 NY Times, she “began being treated for non-Hodgkin's lymphoma in early January and had been undergoing chemotherapy and other treatments in recent months.” The account further states that “Mrs. Onassis entered the New York Hospital-Cornell Medical Center for the last time on Monday but returned to her Fifth Avenue apartment on Wednesday after her doctors said there was no more they could do.... Mrs. Onassis was surrounded by friends and family since she returned home from the hospital on Wednesday.” She died a day later, May 19, 1994. She was only 64 years old.

What did these people know? For one thing, they accepted the inevitability of death. For another, they took control at the end of their lives and chose the place, if not the time, of their deaths.  

What do doctors know? We know that we will not usually stop providing additional services, no matter how futile, if a family or patient continues to demand more. We almost never stop of our own accord. Doctors give patient autonomy very high regard in medical care. Patient autonomy means that the patient decides when to stop.

Doctors often feel bad when they know a patient is going to die and the family just can’t seem to accept it, or understand, and we are forced to provide painful and invasive care at the end of the patient’s life. As in the Hospice study, we know that our procedures, such as chemotherapy, feeding tubes, biopsies, surgery and radiation sometimes hasten a patient’s death and certainly do not make it any more comfortable.

So, to those who are frightened by the thought of a government telling them that they can no longer have medical treatment because they are too old or too sick, I would offer reassurance. Medicare is not going to refuse your treatment at the end of life. Medicare is a government run system which has treated old people for the last 40 years. So far, Medicare continues to provide all the care people need, right up to the end of life.

Instead of worrying about the government interfering in your death, take control of your life, yourself, now. Decide now how you want to be treated at the end of life. You can discuss this question with your doctor and with your family and friends. In fact, many health insurers allow payments to doctors to discuss end of life care even though this idea has caused much of the uproar about “pulling the plug,” and “death panels.” 

Once you have made a decision, and there is no rush in most cases, you should let your doctor and your family know your wishes. There are forms you can fill out, to keep at home and carry with you, which will let every caregiver know your wishes.

If you want “everything done” right up to the last minute, say so. Tell your family and friends and write it down. So far, even with government-sponsored health care, you will get what you ask for.

Jef Sneider, MD

Syracuse, NY

August 2009