Not long ago I met with a friend of mine who oversees the hospice program for a medical center I used to work at. We sat together on a snowy morning in a coffeehouse with a fireplace and shared stories about our work with cancer patients. I had left my practice in a large Midwest hospital to work as a therapist in the private sector and Ann was a nurse who had worked in health care for more than 30 years.
I told Ann about a family from out of state whose father had experienced a prolonged and torturous death from cancer. He had come to the hospital looking for a miracle to keep him alive longer. During his visit, his condition diminished rapidly, and he ended up dying on my floor, away from his larger family and friends back home. He made the trip because he had been hoping the medical community could give him more time. The whole family was in great pain as he became “stuck” at our hospital in his last days of life. Ann nodded in knowing sympathy. I told her that I wished his doctors back home had told him “there’s nothing more we can do” earlier in the process rather than letting him think he had a fighting chance.
At that, Ann looked right at me with a stern authority and said, “I don’t think any doctor should ever be allowed to say ‘There’s nothing more we can do.’ It’s a lie. There’s always something more we can do. Just because traditional treatment interventions have come to an end doesn’t mean it’s over for someone with a terminal illness. I hate when doctors tell people this! I wish we could have that phrase stricken from our language!”
She was right. That patient should not have made the trip in search of last-ditch help from traditional medicine, but there was a better way that message could have been communicated to him. Ann was so right about that, and since that day I, too, have become a crusader against that horrible phrase. I want it banned from every hospital. The end of traditional medicine is not the end of me when I am sick. There’s more. Much more.
The root of the problem is that the health care industry, or better yet, the customers of the healthcare industry — that’s you and I — have elevated nurses and doctors to a god-like level. So we lose all hope when they appear to have given up on us. We’ve come to believe that medical interventions done by medical personnel are our only hope. And while I don’t disagree with going to a different doctor for a second opinion, I do wonder about our state of mind when we have reached the end of all treatments and we’re still looking for that one medical center that’s going to save us or a risky clinical trial that might help.
And terminally-ill patients are not the only ones who lose their way, either. For instance, most of us who, like me, have had cancer, can recall how easy it is to become obsessed and entrenched in all the medical interventions, with their shining promise of health and longer life on the other side. We often can’t see any other way to be when we’re sick. We live for every scan, every check-up and every result. Our entire world hinges on those results. All cancer patients know the special dread of waiting to hear the results of a scan. There are only three possible outcomes.
The first: The scan is over and your doctor says it’s all clear… for now.
The second: Oh no, you have cancer again. Back to the medical world running your whole show. Blood draws, machines, ports, toxic treatments that are supposed to “heal you,” counts, markers, surgeries, etc. All that is the center of your life now, because apparently that’s where all the help and hope is.
The third: You’ve done all you know to do, submitted to every recommendation and every type of treatment, but the cancer still comes back. You are faced with a doctor who gives you a speech that ends with “There’s nothing more we can do.” And you feel, at that moment, completely abandoned by the world.
It’s that third scenario that cancer patients dread the most, and that many will face. Because we have handed over to the medical profession responsibility not just for our bodies but also, somehow, for our hearts and minds and spirit, we believe that those words mean the end of hope and peace and life — the end of everything. But that day in the coffeehouse, talking with Ann, a hospice nurse who has helped hundreds of people “live well until they die,” something clicked for me. I opened my eyes to another way of being.
Instead of telling a terminally ill person “there’s nothing more we can do,” what if doctors actually said something more like this:
My Dear Patient, we’ve come to a point in this journey where to continue with traditional interventions will more than likely not stop the progression of your disease and in fact could do more harm and potentially shorten your life. Having said this, please know that there is much that we can do now to manage whatever symptoms you might experience. I know this news may not be what you had hoped to hear, nor one which you would view as having opportunities. But let me share what I believe might be beneficial to you at this time.
As your physician, I will continue to support you, provide resources to you and discuss your wishes, your goals and your preferences for your care. My goal for you will be to help you make a plan that promotes the highest quality of living for however long that might be. I have seen that this time in a person’s life can be one of profound growth and deeper meaning than ever before. The opportunities I would ask you to consider might include the following: looking closely at your relationships, considering the legacy you will leave for your family, accomplishing goals which you might have put on hold until a later date and time, making decisions about your financial affairs, and making informed choices about how you want to spend your energy and time on any given day.
So, will you help me stamp out that phrase, “There’s nothing more we can do”? By passing this blog on to someone you know who works with patients, or to someone who is facing their own death or that of a loved one? Be sure to tell them there is something more that can be done! Lots more! In fact, they may well be entering the richest time of their life. For help in this area and to explore what options exist for you or someone you love, check with the following wish granting, legacy building and quality of life enhancing resources for help:
Inheritance of Hope–legacy retreats for patients and their families
Dream Foundation — wish granting for adults with a traumatic or terminal illness.
Deliver The Dream — for families where one member has a serious illness.
Stupid Cancer — for young adults affected by cancer
Learn more about hospice and palliative care:
National Hospice and Palliative Care Organization
Palliative care — a specialized form of health care developed to ease the burden of cancer.
Hospice Care — end of life care that focuses on the quality of life rather than the length of life.
Cindy Finch, MSW, LICSW
Reimagine.me columnist and Professional Cancer Survivor
This article originally appeared on reimagine.me a new online magazine for those who have been touched by cancer, and an education resource that teaches a powerful set of skills to start feeling better immediately.
Follow Cindy Finch, MSW, LICSW on Twitter: www.twitter.com/reimagine_me