Palliative Medicine for Serious Illness: Hanging On, Letting Go
by Dr. Ira Mandel MD, MPH
Pen Bay Healthcare’s Hospice and Palliative Care program
Martha was on a ventilator in Intensive Care again despite all of her efforts to get better.
An acclaimed New York City sculptor, she struggled to comprehend how her life was slipping away from her. How could such a free and strong spirit end up so weak and frail in a hospital bed, fighting for her life?
When she was admitted to the hospital, she shared that 20 years earlier, her New York doctors discovered a smoldering lung disease. They said she probably inhaled too much stone dust from her sculpting work, however they did not offer much for treatment. When her stamina began to fade, she and her husband decided to come home to Maine for more family support.
Already in her 70s, she was told that only a lung transplant would prolong her life into old age. Her doctors seemed to ignore her, despite her numerous pleas to get on a transplant list.
A few months earlier, she had had to accept oxygen to stay active, a big blow to her sense of freedom and well-being. Weeks later she was hospitalized with pneumonia that required the use of a ventilator for a few days until the antibiotics and other drugs started to work. It all happened so fast that she hardly remembered anything by the time she was discharged from the hospital. Her illness left her weak and she could no longer stand without the help of two people holding her. She accepted transfer to a local rehabilitation facility to try to regain her strength.
While at rehabilitation she suddenly took a turn for the worse, needing another ambulance ride back to the hospital and use of the ventilator again. Her health was spiraling out of control and Martha was helpless to stop it.
The doctors became increasingly concerned that she would never come off the ventilator, but when she was weaned a week later, the doctors began asking her to consider accepting a “No Code” status, which meant that they would not try to restart her heart if it stopped.
The doctors also wanted her to decide what to do the next time her breathing got worse. Would she want to go back on the ventilator? Would she want the ventilator to be turned off if they could not get her off the machine over time?
She could not believe what she was hearing. She loved life and felt there was still so much more she wanted to do. Her husband could not imagine life without her and was completely against “giving up.” They both asked every doctor that would listen to them if they would help get her on a lung transplantation list. The doctors all replied that she was too sick now to survive the operation. Martha refused to accept her doctors’ grim prognosis.
Finally, she decided that she wanted to stay a “full code” and to be put back on the ventilator if needed again, “no matter what.” Troubled by her decision, her doctors asked her if she understood that this would doom her to ultimately being dependent on the ventilator and then dying on the ventilator. They asked how she hoped to spend the rest of her days which, they added, were very limited. She thought about trying to go home and once asked about hospice but ended up on the ventilator again before she could make any other plans.
After a difficult time weaning her off the ventilator again, she had a last long discussion with her husband and doctors announcing that she still wanted “everything” to be done to keep her alive. She believed that the doctors could perform miracles. Three days later, she relapsed again and died after all efforts to resuscitate her were unsuccessful.
While the doctors felt Martha should have opted for hospice at home to enjoy the limited time she had left, Martha could not let go of life even if her wishes were considered unrealistic and futile.
Everyone is different. It is human nature to “hang on” to life as long as possible. Most people are able to “let go” when faced with relentless suffering, hope for ultimate relief and have the support and permission from their family that they “fought the good fight.” For most people, it is important to spend their final days at home and dying in their own bed with comfort and dignity.
For elderly patients who have outlived all their close family or friends, letting go is often desirable since they feel they have little reason to want to live anymore. Many people have strong faith that they will be reunited with family who died before them. Often they will ask to be allowed to die as soon as possible by refusing any treatment that would prolong their life.
There is no one right decision to “hang on” or to “let go” for all of us all of the time. Living wills are not etched in stone and deserve much reflection and updating. Discuss with your loved ones and doctor often, as life’s twists and turns may lead you to make some different decisions about what you would want if a life-threatening situation developed. It is your life and will ultimately be your death. It is up to you to define how you would want it to be. Talk about it, reflect on it and update your living will to make sure your wishes are honored. Do it today. Don’t wait.
Interested in learning more about Palliative Medicine? For more information call Kno-Wal-Lin Home Care and Hospice at 594-9561 or visit these websites: www.caringinfo.org or http://www.caringinfo.org (click on the “Kno-Wal-Lin” tab at the top of the page and then click on “Hospice and Palliative Medicine”).
Ira Mandel, M.D., MPH is a Palliative Medicine physician and is medical director of Pen Bay Healthcare’s Hospice and Palliative Care program. He provides compassionate care with a team of health professionals who honor the wishes of patients with serious illnesses. His monthly column seeks to inform the public about choices they may wish to consider. Disclaimer: All people described in this column are not actual patients but are derived from many hundreds of patients Dr. Mandel has treated over many years.