Planning for the inevitable: Taking time for end-of-life decisions

Advance care planning is crucial for preparing for the inevitable.

Advance care planning avoids the uncertainty of what to do with terminally debilitated patients [REUTERS]

Americans are embedded in a death-defying culture. Extreme sports earn accolades in real life and on video screens as cosmetics promise age-defying results. But in reality, death is inevitable.  

Hurricane Sandy hitting the Northeastern United States recently claimed the lives of 110 people unexpectedly and within a very short time. About 600,000 people die of heart disease and 570,000 people die of cancer in the United States every year. 

Everyone who is born will ultimately die. Who are these people? They are the family breadwinners, parents, caregivers, children, community leaders, schoolteachers and activists. They are young, old, ill, well, they are you and me. 

Whether it comes about suddenly without warning as in the recent hurricane or after a chronic, progressive illness, every day, families are struck by the loss of a loved one and as a result, their lives change directions.  

Yet, while we may prepare for financial security for our family, we often fail to prepare for medical treatment choices – leaving our loved ones to make decisions that they may be ill-equipped to make.  

Physicians are trained to treat diseases and patients expect to benefit from the technological advances that are reported in the mainstream media. Physicians are often poorly trained in advance care planning and many of us find these conversations uncomfortable and time consuming. 

As a result, this process is rarely carried out and tragically, the subject is too infrequently broached. It is not uncommon for the first conversation to occur at the time of a medical crisis. 

I know because I deal with these crises every day.  

A case study

Mrs B (not her real name) was married for nearly 50 years. She was diagnosed with lung cancer and over nine months, she declined slowly, contracted pneumonia and was eventually hospitalised.

During morning hospital rounds, I found her breathing to be more shallow and rapid. She was teetering in and out of consciousness. Given the extent of her cancer, it was unlikely that she would survive the day without artificial ventilation. 

With the help of a breathing machine, she could likely survive a few days – but it was unlikely that she would live to leave the hospital.  

“Even in the case of terminal illness, very few people have an advance directive indicating what measures they would want taken at the time of their death.”

She had no advance directives indicating whether or not she would want such artificial intervention. The medical resident attempted to ask her what her wishes on this delicate subject were. But at the time when a patient is using every ounce of energy to take each breath, Mrs B was in no condition to make this life or death decision. 

Her husband was contacted and he began to make his way to the hospital. Her son, who lived closer, would be at her bedside in 10 minutes. When he got there, he was met with a struggling mother, but she was aware that her son was there. The medical resident asked him if his mother had ever discussed life sustaining therapy, and sadly, as is often the case, he was unaware of any such conversation. 

Without an order not to, the default mode among physicians is to pursue all life sustaining therapy, including artificial resuscitation. We as doctors are trained to treat. A “code” was called, bringing a team of doctors from all ends of the hospital – nurses, anesthesiologists and pharmacists equipped with medications, monitors and a ventilator machine. They ran into her room to start the chaotic and intrusive process of intubation. 

Her husband arrived 30 minutes after this difficult process was complete. She had already been transferred to intensive care.    

Advance care planning is more than an advance directive, a paper too few of us complete with boxes to check indicating what we would or would not want to sustain their lives. 

Advance care planning begins with a conversation about personal goals, values and beliefs that provide our own definition of living well. Ideally, such conversations end in written plans that reflect our wishes and take the burden off of loved ones. 

Advance care planning

Developing an advance care plan helps us prepare for unexpected events that render so many incapable of making health care decisions. They provide an opportunity to express what functional capacity provides us all with some standard of fulfillment. That standard is individual, but may require the ability to interact with loved ones, to attend to basic personal care, or to live independently. These are personal goals that we can define. 

Why then, even in the case of terminal illness, do so few people have an advance directive indicating what measures they would want taken at the time of their death? As reported in the Journal of Palliative Medicine in April 2011, only 15.7 percent of patients with cancer being treated at MD Anderson Cancer Centre admitted to the intensive care unit had a living will and less than half had designated a health care proxy to speak for them if they were unable to speak.  

Mr B sat at her bedside unable to communicate with her. Within the ensuing six hours, her husband came to realise that she was not going to recover. He said his wife would never want to be kept alive in this artificial way. 

He was then faced with the emotional decision to withdraw the life sustaining therapy, after it had already been initiated. He ordered that the breathing tube be removed, and her team of doctors worked to maintain her comfort with medications.

She died peacefully that night with her family at her bedside, with no tubes and no intrusions. 

The process of advance care planning is a dynamic one. When done well, these conversations begin when we are well by asking ourselves this: “Are there circumstances when I would rather be allowed to die than be maintained by medical treatment?” At the time of a chronic or debilitating illness, the answer to this question may change.  

Tragedies such as Hurricane Sandy as well as tragedies around the globe remind us that advance care planning is not just for the ill. Incorporating the language and concepts of advance care planning into general healthcare and community organisations will promote respect for self-determination and remove the stigma and discomfort of end-of-life discussions. 

Mary F Mulcahy is an associate professor in the Department of Hematology Oncology at Northwestern University’s Feinberg School of Medicine. Specialising in the treatment of pancreatic, biliary, esophageal and liver cancers, Mulcahy has more than 10 years of experience in caring for patients with terminal illness. She is the co-founder of Life Matters Media, launching in 2013 to help all of those involved in end of life decision making. Life Matters Media now tracks all news pertaining to this time here.