The misinformation about health care legislation that is flowing in the public arena these days is astonishing and, more sadly, so destructive.
There is a sad heart to all this talk about conversations between doctor and patient about death and dying and about whether these conversations should be funded and so made more affordable to all patients.
I am stepping back these days from my role as a cancer survivor's caregiver.
My husband is now 4 1/2 years out from treatment for stage 3 colorectal cancer. He still visits doctors every six months and gets scanned and probed and blood drawn to make sure that micro-metastatic cancer is not lurking and growing unseen in his body. He still continues to recover from the physical consequences of nine months of treatment - chemotherapy, radiation, surgery, and more chemo.
We are the lucky ones. We had good health care. We lived near good doctors. Even thought life is not what is was - and will never be - we are living in a new normal that allows us to be here, with each other, sharing more life with each other.
And so I am slowing stepping back from my role as cancer caregiver and back into a more joyful duty as wife and mother, companion and mate.
Others I know have not been so fortunate. They've lacked family and friends to help them get to treatment, to eat and drink, to have something to live for. They've lacked insurance. They've lacked the background health they needed to endure the arduous sufferings of treatment. They've lacked the education and the self-worth to insist upon the best of care.
Some of these patients did not have the conversation they needed to have about their death with their loved ones or their doctor. Their last days were a dreadful dirge of interventions, operations, and painful consultations in brutally lit hospital halls, as family members wrestled with the brutal, grim reality of whether to continue to intervene or to stop treatment, turn off machines, and let go of the person they loved.
All because they never talked to each other when they could.
It seems to me that the people opposing heath care reform lack something more than the right information. I feel they fail to understand that this issue is not, ultimately, about the fortunate Us against the less fortunate Them. I know that they do not understand that one day they will be standing in my husband's shoes, and in mine, and they will need the help we got and seek the comfort we received knowing that we were doing all we could to save his life.
Today, in the NY Times, Dr. Pauline Chen writes about the conversation she and other doctors must have with their patients about the end of life. The piece cuts through all the bullshit that's being flung these days in the political arena. Dr. Chen gets to the humble heart of this human matter and, by doing so, puts all those cynical pundits and spokespersons, those lobbyists and politicians, who are using this matter to make political hay, to shame.
As someone who has written an entire book about the difficulties of caring well for the dying, I find all the fury aimed at halting support of end-of-life care discussions more than a little ironic. Why? Because the truth is that most of us need all the help we can get to start these difficult conversations. The truth is that we never talk or even want to think about talking about dying because we are afraid of dashing our loved one’s or our patient’s hopes. The truth is that we fear — even abhor — these discussions because we believe that by talking about dying we are giving up.
Yet all of those imagined fears could not be farther from the reality of end-of life care discussions. At least according to some of the best research on the impact of those conversations on patients and their loved ones.
I know many of you in the DailyKos on-line community have had your share of seeing parents or children suffer. Some of you have stood in hospital corridors yourselves, waiting for a loved one to come out of surgery, or perhaps even sat at the bed of a spouse or companion as they've passed away.
These things are something we all face if we enter into committed relationships.
I know that our political representatives and the people who are employed by insurance companies have had these experiences, too. This shared experience is not one we can shrug off or opt out of, unless we choose to live as disconnected, compartmentalized beings - separate from ourselves and each other.
We need to learn, as a national community, to get past fear, to help each other live and die with grace, dignity, and respect. Unless we can do these simple but profound tasks, how can we hope to address the larger problems we all face?