It will be a year this July 11 that Donna went into the hospital to have a pleural effusion. A week later she was admitted to hospice. Three weeks after she passed away. As this anniversary looms before me I read an article published in the NEJM "Grief, Depression, and the DSM-V". It reminded me of something someone once said 'Hospice Saved My Life'.
Richard A. Friedman, MD points out that nearly 2.5 million Americans die each year leaving behind a large group of grief-stricken people. He further points out that for the vast majority, grief typically runs its course in 2 to 6 months and requires no treatment. Currently in the DSM-IV a physician would identify depression as grief-related and not diagnose clinical depression. The APA for DSM-V is considering characterizing bereavement as a depressive disorder and encourage clinicians to diagnose major depression in a person with normal bereavement after two weeks of mild depressive symptoms. The data that Friedman presents shows that depressive symptoms in the context of grief are different in course and prognosis from clinical depression. Data also shows that 10% to 20% of bereaved people do not get over their loss. Friedman states that clinicians should be able to distinguish between clinical depression and uncomplicated grief, so as to 'normalize, not medicalize, grief'.
Bereavement is after the fact and what Friedman and the APA are addressing is a reaction to an event. In my view there is an opportunity to begin the management of simple or complicated grief earlier.
When Donna was diagnosed with Stage IV NSCLC and told she had six months I knew this story did not have a happy ending. Luckily our oncologist saw beyond the data and gave us nearly three years without horrific treatment and side effects. In addition to the clinical skills he gave us, he subtly point out a path beyond the end of life. He knew from experience that the spouse suffers as much if not more and for longer. He took one look at me and gave me the number of CancerCare where I began some counseling which ended as treatment slowed disease progression. I went back to CancerCare at Donna's passing. In a sense our oncologist provided palliative care for Donna well before her need. And on some level for me if we see palliation as a process to relieve and manage suffering for the caregiver. That is the magic of palliation and hospice, it cares for not just the physical patient. It cares for the gestalt of the patient.
That level of care for Donna continued in hospice with the amazing clinicians and support staff at Beth Israel and MJHS. Their first task was to give expert clinical care to Donna. Without missing a beat I became a secondary focus of their care as well. They looked after me first by caring for Donna and then reaching out to me both during her time at Karpus 4 and after. So in a way I as a caregiver/spouse was part of Donna's treatment plan. I am not out of the emotional woods. I choose to live every emotion associated with her diagnosis and death to its fullest in hopes of finding understanding through this painful work. I will go through it and not around it.
Friedman is correct, it would be better to normalize, not medicalize grief. Our oncologist, MJHS, and CancerCare are also correct. The grief stricken ones left behind can be managed as part of the care given to the patient. The trouble with this comes down to the simple fact both consumers and HCP do not consider palliation or hospice early if at all. That is a hurdle we may never clear. But if we do begin to help those with terminal illness move into palliation and hospice we can begin to look at those who'll be left behind with the goal to improve uncomplicated grief's effect perhaps reduce the percent of loved ones who suffer long and debilitating complicated grief.
And to take that one step further. Those of us who have joined groups like Widowed Village to find help and support in navigating our loss may want to share our experiences with those who will be facing loss. We are helping ourselves and each other to heal in an amazing community but each of us who lost a loved one to a terminal illness knew this day was coming. We are overwhelmed and saddened at the death and our response may or may not be complicated. Can we become a an advocate for palliation, for hospice, for the preparing loved ones to begin to face their grief not prematurely but with an understanding that together we heal better. Can our experiences be used not after the fact but before?