Recently a patient with advanced lung cancer was admitted to a local hospital. Pain in his abdomen was diagnosed as a gallbladder infection.
Because he had metastatic cancer, in addition to the new problem, the patient and family decided that if things deteriorated he should not be given CPR or put on a respirator. A Do Not Resuscitate (DNR) order was entered in his chart. Treatment for the gallbladder was continued, but it was decided that there was a line that the doctors would not cross.
This made sense to me.
Try conventional therapy, but if he was too weak to recover, then do not continue treatment which could cause more suffering than benefit. Give him the opportunity to survive the gallbladder problem, but respect the terminal nature of the greater disease. We were all gratified when his pain and fever went away, and he recovered from the emergency.
When we were discharging him from the hospital, a surprising thing occurred.
The patient and family requested that since he had survived the infection, that the DNR be reversed. They decided that when a sudden new major medical complication occurred, that CPR be performed and he would be placed on a respirator. The clear protective line vanished.
In difficult lengthy discussions with the patient and family, it became clear that they were riding tides of emotion. When things looked better, they focused on life and “cure.” When things grew worse, they were ready to withdraw. They became defensive and angry at the suggestion that this decision might cause suffering. We were not able to redefine limits to his care.
Like many chronic illnesses, cancer can be a roller coaster ride of hope, false hope and failure. Patients and families cling to the smallest good or bad news. This erratic course is one of the things that make cancer so difficult. Lack of familiarity and personal experience regarding disease can create emotional chaos. Our societal denial of death may undermine real understanding.
The failure to set goals early in the course of an illness makes things worse. Often patients do not plan with their caregivers before medical events are acute. Then they are trapped making decisions in the middle of rapid change, suffering and fear. Physicians have an obligation to teach families what is possible and what is likely to happen. This gives patients and families the chance to decide what are their real goals and what they want out of their lives.
Things ended hard for this patient with advancing lung cancer. He came back in the hospital within three weeks with pneumonia and suffered a respiratory arrest. As was his wish, he was put on a respirator. The cancer had made him too weak to fight or heal. The infection deteriorated over two weeks into shock and kidney failure. Despite the respirator, dialysis and many intravenous drugs, his heart stopped. CPR over 26 minutes did not work and he died.
This was an exhausting terrible experience for the family and it resulted in futile discomfort for the patient. The doctors and nurses felt guilty for the suffering they had caused. I suggest that the problem was that line. His life may have been different if month’s earlier doctors had taught that patient and family about the reality of his lung cancer. Made it clear that eventually death would come. And that is a line we all must pass.
James C. Salwitz, MD is a Medical Oncologist in private practice for 25 years, and a Clinical Professor at Robert Wood Johnson Medical School. He frequently lectures at the Medical School and in the community on topics related to cancer care, Hospice and Palliative Medicine. Dr. Salwitz blogs at Sunrise Rounds in order to help provide an understanding of cancer.
I respectfully disagree with my colleague MDasH, death sucks if you have a soul and compassion. It brings relief at times, but it still hurts. And hurt sucks.
By the way, even if a past intervention “failed”, it means you don’t try to invoke change again? How do you induce change with a concept like accepting death with this culture? Group email?!
Unfortunately this is not rare. Patients and families revoke hospice status and resume normal Medicare when they really get sick. In the nursing home theyare a full code but when sent to the hospital they are made a DNR. They when they survive they go back to the nursing home and become once again a full code.
This is only human nature and should not be surprising. It is aggrivating but not surprising. What is missing is a single doctor taking care of the patient at all points and taking care of the family and their emotions.
Death may suck but not all deaths suck. Some are a loving gift. A long and great life should never be punished with a painful bad death. I have this talk with families all the time in the ED. Some are ready to hear and some are not.
Wow, that is a terrible story to relate. And 26 minutes of CPR, that is just so painful to imagine. As I have written in prior threads at this site, so often the decision to push the “full court press” is so rarely what the patient really wants, but just that of selfish, clueless family that can’t handle death.
Health care expenses will never really be managed responsibly in this culture as long as supports to a patient prevent the patient from realizing his/her true own needs. That goes for both the elderly as much as the young with congenital or horribly complicated acute illness that is not amenable to realistic care options.
Death sucks, no argument otherwise. Making others try to avoid the unavoidable is just throwing jet fuel on the fire! For those old enough to remember the show “Scared Straight” about teens going into prisons to face convicts to avoid the convicts’ fate, maybe it is time for a show like this for people to rethink making loved ones go through acute care interventions for no healthy endpoint.
Maybe “Death never takes a holiday”?
Scared Straight didn’t work.