I recently read a book titled “Mortality” that was written by a surgeon and addresses the problems and challenges we face with end of life care. It dealt with some examples of patients he had cared for and his personal experience with the care of his father.
As I read the book I was reminded of a patient I recently saw in the emergency department who had a cancer in her abdomen. I had not seen her before. The cancer was not curable and she had already been through surgeries and chemotherapy yet the cancer was still present and growing. She came to the emergency room because she had developed acute severe abdominal pain during the night. Testing quickly showed that she had a perforation of her bowel which was the cause of her pain. This meant that without surgery she would surely die.
We tend to assume that people will want all the treatment that modern medicine can provide to prolong life. She could have surgery to find the perforation, try to repair it, and drain the bowel to the skin. She would have had a difficult hospital course with no guarantees that she would survive the painful procedures done during the course of her treatment. She would have been separated from her family with tubes coming from all parts of her body. The surgery could have repaired the hole in her bowel but would not have solved her underlying problem. The cancer would have still been there.
As I was starting to prepare her for emergency surgery and was explaining what would have to be done to her, she told me that she was going to go home. I suddenly realized that this was an option that I had not even offered her. She was very clear about what she wanted to do. When she heard the diagnosis and the prognosis it was not hard for her to make her decision. She wanted to go home to be with her family and die at home. She would be able to take pain medications and receive comfort care at home. She really wanted the type of care that would allow her to go home and die with some dignity and know that she had some control over her care.
This encounter reminded me that not every patient wants to have every possible treatment. We are mortal and people still die from some awful diseases for which we have no cure. With the knowledge of her condition, this patient had already thought about what she wanted at the end of her life and was prepared to make the decision to go home. People who have the chance to talk about what they want at the end of their life tend to have a better chance of having control of their end of life care. Their care tends to be much less invasive and much less expensive. Unfortunately, too often in today’s health care environment patients don’t have the hard discussions with their providers about what is important to them at the end of life. It is complicated because doctors can spout statistics and perform procedures but we really can’t always predict what course a disease might take. In many cases aggressive care is appropriate and can be life-saving. However, when patients are faced with incurable medical conditions, the best treatment may be to provide comfort and preserve dignity. Patients can help their providers direct the intensity of care they desire only if these hard discussions occur ahead of time and options are provided. Sometimes family members are called upon to make the decisions and hopefully they made the effort to find out what the patient would want.
The book is interesting reading and gives the reader an opportunity to acknowledge mortality in ways that may change how we live and end our lives. Making the effort to discuss these issues with family and health care providers can help provide comfort, control, and dignity at the end of life.
By: P. Michael Shattuck, M.D. – Community Health Network Family Physician