Being Mortal: Chapter Six

Hector Madariaga, NSMC intern and transplant fellow wrote the summary for this chapter.

Chapter Six: Letting Go

Most of this chapter describes the sad case of Sara Thomas Monopoli and her journey from being diagnosed with metastatic lung cancer while 39 weeks pregnant with her first child to her demise a few months later. She was only 34 years old. Sarah failed multiple rounds of chemotherapy and despite continually deteriorating, she, nor her family, came to terms with her impending death and she passed in the ICU without saying goodbye.

Dr Gawande discusses the fact that 25% of all Medicare spending is for the 5% of patients in their final year of life, and most of that money is spent in the final few months. He describes the finances of breast cancer where $28,000 is spent in the first year, primarily on surgery, radiation and chemotherapy. After that the costs fall to $2,000 per year until the final year of fatal cases of where the costs swell to $94,000. (ref)

Our medical system is excellent at trying to stave off death with $12,000-a-month chemotherapy, $4,000-a-day intensive care, $7,000-an-hour surgery. But, ultimately, death comes, and few are good at knowing when to stop.
— Atul Gawande

This intense medicalization of death arguably does more harm than good. A study in 2008 showed that cancer patients who were put on a ventilator, given defibrillation, chest compressions, or admitted to an ICU had a substatnitally worse quality of life in their last week of life. Worse, is that this trauma is passed on to loved ones. Caregivers of these patients had three times the rate of major depression. (JAMA 2008)

He describes how advancements in medicine make death a long process rather than an event that lasts a few hours to days. He describes ars moriendi, literally the art of dying. These were prescribed customs people followed when they died. These procedures were published in popular pamphlets and described seeking forgiveness from God, letting go of worldly possessions, and provided friends and families prayers and guidance for the final hours. Gawande argues that we need a new ars moriendi appropriate for the contemporary reality of the end of life.

So I sat with her sisters in the ICU’s family room to talk about whether we should proceed with the amputation and the tracheostomy.
“Is she dying?” one of the sisters asked me.
I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die.
— Atul Gawande

e also describes his rounding with Sarah Creed, a nurse practitioner on the hospice service. He interviews the patients and explores their decision to go into hospice care.  One
thing that I learned is that hospice care is not about “letting nature take its course” or to prolong life (that’s the goal of medicine), but to focus on patients' priorities. Their first patient had end-stage heart failure with pulmonary fibrosis. Sarah helped her get medication refills which had been sitting at the pharmacy.

He also explores the rational of terminal patients when they are given a poor prognosis and why they continue to pursue therapy with the hope of extending their lives, when in fact, they only have months to live. Sarah explains that 99% of her patients understand they are dying but they all still hope that they are not. Only about quarter of them have accepted their fate.

The next patient is Dave Galloway, a former firefighter with pancreatic cancer. He is in terrible pain and Sarah has to convince him to use the PCA pump more often. Gawande goes in to detail about a "comfort pack" which is a bundle of useful medications for everything from dyspnea to delirium. Dave's wife knows how to use the medications and is provided with a 24-hour phone line she can call for advice of what medications to use in which situations. The comfort pack provides her an ability to provide care to her husband through his final days and keep him at home comfortably.

Gawande talks a bit about how difficult a problem this is to solve, since solutions often sound like rationing. He then goes on to discuss the story of Nelene Fox, the women who sued Health Net when they refused to pay for her bone marrow transplant for breast cancer. The insurance company did not pay for the experimental procedure. A jury awarded $89 million to her family. Legislators in 10 states then enacted laws requiring insurance companies to pay for bone marrow transplants. The procedure has since been shown to be ineffective for breast cancer. [Note: Intererested readers should check out The Emperor of All Maladies, a great book that digs into the science behind bone marrow transplant for breast cancer and the scientific fraud that perpetuated this practice.]

A landmark study from MGH is also mentioned, in which they randomized 151 patients with stage IV lung cancer. Half received usual oncology care and the other half oncology care plus visits with a palliative care specialist. The results were fascinating. Those in the second group, stopped chemotherapy sooner, opted for Hospice care earlier and lived 25% longer. A similar study is also mentioned in where they too found that palliative care extends survival. As stated in the text:
“You live longer only when you stop trying to live longer.” 

If end-of-life discussions were an experimental drug, the FDA would approve it.

The author also explained the end-of-life discussion in the community of La Crosse, Wisconsin in which their is a systematic and widespread effort to get people to discuss end-of-life wishes prior to the, you know, end-of-life. When ever someone in La Crosse is admitted to a hospital, nursing home or assisted living facility they complete a four question form:

  1. Do you want to be resuscitated if your heart stops?

  2. Do you want aggressive treatments such as intubation and mechanical ventilation?

  3. Do you want antibiotics?

  4. Do you want tube or intravenous feeding if you can’t eat on your own?

They increased advance directives from 15% to 85% in 5 years. The ICU doctor Gawande talked with explained that the benefit is not the answer per se but that people have discussed the issues long before they are admitted to the ICU. End-of-life costs in La Crosse are half the national average.

How to approach the end-of-life discussions? Every case has to be individualized; some general rules are: sit down, take your time to talk to family and patients, learn what’s most important for the patient under any circumstance and finally, listening. As Mrs Block, a Palliative care specialist says: “if you are talking more than half of the time, you’re talking too much.”