When I first began working for hospice over fifteen years ago I was surprised by how many times I was the one introducing the idea of signing a DNR, Do Not Resuscitate, to someone who had been diagnosed with a terminal illness months before and was now in the rapid decline of the dying process. Without a DNR at the hospice house acknowledging your wishes to decline life saving measures when the time came that you were actively dying, I would be obligated to call 911 and have an ambulance take you to the ER. Many patients coming from the hospital had DNRs with dates written that day. More often than not, the elderly coming from home brought well worn DNRs that had been hanging on their refrigerator for as many months as they’d been diagnosed. And yet, for too many I thought, the first conversation on life saving measures came just a few hours or days before the person died. Shouldn’t that be a topic discussed with their doctors long before things became as hectic and stressful as they were now becoming I thought? Wouldn’t you just assume with all the doctor appointments a terminally diagnosed person goes through in their final months that there would be one moment in time when there was a frank discussion on what life saving measures meant for someone depending on where they might be in the dying process?
The conversation about signing a DNR with the hospice nurses and later hospice doctors was probably the first frank discussion of how close the person was to dying, not just the fact that they were going to die..sometime. My brother in law, who had stage IV lung cancer, was rushed to the hospital for severe stomach pain three months after his diagnosis. The hospital doctor asked my sister what her wishes were, to which my sister replied “ he wants to be home for the football game on Sunday.” The doctor replied “No, I mean his dying wishes, he only has hours at the most to live.” My sister was in shock. His doctors had ‘promised’ five to six months. He did not have a DNR, but it didn’t matter because he was actively dying and there was nothing that could be done, the cancer had taken it’s toll. Sometimes I would meet the family or patient who were not ready to let go and desperately held on to their hope that they could put off death even for a little bit longer, and so it was not surprising to hear them say ‘Do everything!..I want CPR, I want a ventilator, whatever it takes!’ But just what is the reality of ‘doing everything’ for a terminally ill person? I was left with the difficult task of explaining that in the event that your heart stops, I can do CPR. Performing CPR does not guarantee you will survive, or if you do, that you would awaken in your current condition to go on living life as you are now. There is a significant possibility that doing CPR may create even more health problems for you. Thanks to television, many people have the very incorrect idea that CPR works 100% of the time. But what is the reality of performing CPR on the compromised body of a terminally ill person? Will you be in the hospital at the time and receive immediate CPR, or will you be at home or somewhere else and wait for help to arrive? It makes a difference. CPR performed on the elderly with chronic illnesses are given a less than 5% survival rate, the terminally ill less than 1%, and if you are no longer able to get out of bed with metastatic cancer your survival rate drops to between 0 and 3%. Did anyone mention that if or when you discussed your wishes for life saving measures?
A ventilator is a machine that forces oxygen into your lungs. A ventilator is not simply an oxygen tank that you see people at the Mall rolling beside them. A ventilator is a machine which delivers oxygen through a tube down your throat to your lungs. When you are on a ventilator you will not be able to talk. You will receive your nutrition through an IV or feeding tube. A ventilator is not a cure for the reason you are unable to breathe on your own, it simply prolongs the time until your disease causes other organs to fail.
Ultimately in each of these scenarios you will die, most likely in a hospital hooked up to machines, and restricted to hospital rules and policies. All terminally ill people die, it is only a matter of where, and when. And because it is your life and your death, shouldn’t you know the facts in order to plan the rest of your life accordingly? For those terminally ill patients and families who are facing these issues right now, it may be heartening to hear that research is showing that patients receiving palliative (comfort only) and hospice care live an average of three weeks or longer with higher quality of life than those who did not opt for hospice or palliative care. Would you live your last days differently if you were given an honest assessment to plan?
Statistics mentioned above from CompassionAndSupport.org, more info here, hospice research, and one doctor’s perspective on death and dying. Here is an excellent Frontline video from doctors’ perspective discussing their failings to be completely honest with patients at end of life.