Presence and Hope count

I received an email the other day, that stated "no one wants to talk about death." And there is soe truth to the statement, in that, people don't want to be in the position where they have the need to talk about death. But on my hospice unit, patients and family members ask me every day to talk about death, because it is the reality they are living in that moment. "doc, please talk to me about ..." (their loved one).

Hospice units are set up to manage pain, and pain is a complex feeling. For one thing every day we see patients in pain, but we also see their loved ones in pain. There is physical pain, but as well there is the pain of loss, and of loneliness, and of hopelessness.

It never ceases to amaze me that medical specialists, claiming to be "evidence based" through science to the wind, and "try" futile medically ineffective actually sometimes harmful procedures with the intention of giving someone "hope," and at the same time deride prayer as "unscientific." Physicians are trained (or ought to be trained) to weight benefit and risk, and when we have no scientifically proven cure for a disease, the comparing of benefit and risk isn't all that complicated.

Now as a caveat - it is my own practice to always attempt to utilize scientifically effective methods such as medication and surgery, when they are likely to help a patient. This is what we are trained to do as physicians - the dilemma is when we do not have an effective cure. What then?

A "scientific" analysis of prayer would show it to have low to no cost, and no physical side effects. There isn't a lot of downside. And in large scale lookback studies done of the medicare database, hospice patients lived an average of 21 days longer than patients treated with aggressive medical processes that could be shown in advance to be unlikely to work.

Here are a couple of observations from many years of end of life care:

1) We can continue to care even when we cannot cure.

2) Patients and families want to talk about the realities that they are facing.

3) Patients who focus on the faith that comes from their own family and their own history, suffer less than patients who focus on "the pain."

This was really hammered home to be today, when I offered an increase in pain medication to a patient with a very severe cancer. The patient said, "I want to be more awake when my son comes to see me, let me take more medicine later if I really need it."

Moments can be surprisingly meaningful, people can talk to loved ones (or if the Team will listen, just to other human beings who give the gift of "presence.")

Most Christians, Muslims, Buddhists and Jews agree that there is some sort of continuation of consciousness after death, we cannot test this "belief" - that's the definition of faith - acceptance of something for which we do not have proof.

However this much is scientific fact and scientific truth - patients who are encouraged to talk about their own beliefs suffer less than patients whose care teams focus on death as "the end." Patients who are allowed to have hope, and gifted with presence, and who not face loneliness, suffer less than patients who are told in effect - "you are going to die. There is nothing I can do. Come to terms with it and accept it. I have to treat someone else who can still be saved. Don't cry - you'll upset other people."

Chaplains and Social workers in Hospice are very helpful in combatting loneliness. I have seen wonderful stories of Chaplains helping people pray, not in the belief system of the Chaplain, but in the tradition of the patient. It is about the patient.

Alternative methods such as Reiki and Music Therapy and Massage are all helpful, and in fact, scientific studies have shown they are helpful. What is fascinating with Reiki, is that the skill level of the practitioner is not always the most important thing. Presence alone combats lonelines; talking about whatever faith a person has reduces the sense of hopelessness, and as we provide presence and hope, we see less suffering.

I can remember patients from 20 years ago, who passed away from illnesses for which we have cures today. I can recall the faces, and the hope and the spirit of some of these people. And in caring for patients today, I know we will develop cures over the next 20 years that will alleviate some diseases we cannot cure today. And what I have learned is the need to work within the present, and to work with what we have.

Human wisdom though, does not begin or end with science. Science is an incredibly valuable "tool," and we want to use it whenever we can. We should never stop Caring with those aspects of human wisdom which we have, when science has not yet given us a Cure for today.