This past Tuesday, we held a funeral for my wife's grandfather. He was a remarkable man credited with bribing Nazi's for the release of a Jewish family during World War 2, served his country in the army coordinating munitions deliveries, traveling Asia and Europe as he became one of the trailblazers in costume jewelry (including a framed picture of Eisenhower wearing his cuff links) and knew the heads of Liz Claiborne, and Swarofsky to name a few. We even found out that in his early life he worked as an acrobat (he was the guy who held up the pyramid!).
An amazing man with a long and full life. However, the sad part of this amazing life story is not how he lived, but how such a remarkable man died.
Burly was 98 years old, and up until 2 years ago fully independent. He regularly went out with friends, emailed family and regularly attended public events. He was sharp witted and a consumate entertainer and storyteller. He was awarded an honory degree a few years back to make up for the college degree he never got. Did I mention, he swam every morning for an hour too? (a habit he picked back up after a quadraple bypass in his 60's).
However, over the last two years a heart problem he had with a valve was getting worse and the amount of blood volume his body could pump out suffered. He was too old for anyone to perform surgery and we all accepted that fact. He lost energy, suffered chest pains, and became more and more lethargic as the decline hastened. For the last 6 months especially he suffered from daily panic attacks and chest pain. He was always a fighter and that was a remarkable thing about Burly, but we knew his days were numbered and he was increasingly uncomfortable and in pain.
More than 6 months ago, his family asked for a palliative care consult to make him comfortable. His chart was already marked do not resuscitate, which meant should his heart fail or if he suffered a major medical issue, they would not revive him. However, this palliative consult came and went.
His Doctors said they didn't think he needed it yet. The family talked with his Primary Care physician and Cardiologist. Both said they didn't think he was there even though they saw him as he was admitted to the hospital 1-2x per week, week after week. The irony being each time they saw him and told him there wasn't anything they would be able to do for him. So once the episode passed, he went back home each time.
The last months of his life were spent bouncing in and out of the hospital, at tremendous expense (both financially and mentally), with each day bringing about fear and panic in Burly and his family. We knew there was nothing to be done, yet repeated attempts to help make him comfortable were ignored. They asked his Doctors again and again, and they said they were not comfortable or ready to go down this road with Burly. So instead Burly suffered each day fearing death and feeling both panic and pain when the chest pain hit. The best they were able to do is a prescription for a sedative to keep the panic attacks at bay -- but never made him comfortable long enough given the discomfort felt by his failing heart.
Six months after his family asked his Doctor's to help make Burly comfortable, he passed away when his heart finally gave out. This is not how such a great man should have had to go. He should have been able to die peacefully, comfortable, and at home -- where most of us would prefer to be.
How could this have been different? What can we learn?
Most people when surveyed would like to leave this world peacefully and at home. The majority however die in hospitals and in pain. Even when families are proactive about seeking palliative care, physicians who do not specialize or deal with this often enough, seem unwilling to let go and agree that in fact, no more can be done or get the appropriate teams in place to make someone comfort at this most important time.
What motivates them to deny this end of life gift to be comfortable? Is this ego, fear, or an unwillingness to admit defeat? If we've exhausted all the options, perhaps comforting the dying is the only thing left in our power to do and doing nothing may in fact be worse.
We all wish Burly farewell and know he is no longer in pain and finally at rest.
