Thursday, May 31, 2007


During one of my presentations on The Patient Perspective, a surgeon asked me how I thought it was that I was able to get to such a place of peace with illness and death. As much as I’d like to pronounce myself exceptionally deep or terribly smart, the honest answer is simple: practice. Since I was old enough to have even a minor grasp on my disease, I knew I was not going to live into my 80’s. Or 70’s. For that matter, living into my 40’s would be a gift. Carlos Castenada has a saying about living with “death on your shoulder”. I have lived that way for many, many years.

Besides facing the abstract possibility of dying young, I have had times of truly looking death in the eye. When I was around 10, I became so ill with pneumonia that my mother called the minister in to pray over me in case I wouldn’t make it. When I was in my early 20’s I was so sick that I was put on the lung transplant list and proceeded to deteriorate over the following 5 years of waiting for organs. The question of whether or not I would make it to transplant was never far from consciousness. In my late 20’s, I was once again diagnosed with a terminal illness, Chronic Rejection, and was told that a second lung transplant was not a possibility. I prepared to die without the possibility of any net to catch me. When things changed and I was put on the list again, there was certainly no guarantee that my body would hold out until another set became available. In all these ways and in all these different scenarios I have had the opportunity of practicing how I will die. If I were to assess myself, I would have to admit that the first few attempts to die well were not well done. I was riddled with fear. I was in a headlock with denial. I was immersed in self-pity. It was not until the third and most difficult time that I was able to move through the stages of grief and arrive in the beautiful place of acceptance and peace. It took practice.

Practice. Isn’t that the word doctors use to describe their job? They practice medicine. They have a practice. It dawned on me when I was answering that surgeon’s question that, more than any patient, they are the ones with all the practice in illness and death. They see it every day. They deliver the news that it is time to go wrap up life and prepare to say goodbye. They watch it unfold before their eyes in many different ways. They are often present at the moment someone dies.

Why then, do they lack the answers so many patients want to know? When I was diagnosed with Chronic Rejection I had one main question; “What do I do now? How shall I proceed from here?” The answers I got ranged from a confused shrug to “Well, you’re not on oxygen yet!” Of course doctors and nurses can not tell their patients how to live their lives. Of course they can’t give specific, concrete answers on the nest step to take. But I can’t help but to think that with all that experience, couldn’t they provide some guidance, a compass for which direction to begin the journey?

If I could go back in time and tell Tiffany Who Has Just Been Diagnosed With Chronic Rejection And Has No Hope Of A Second Lung Transplant where to go from here, I would tell her a few things. First, that she should enjoy the health she has now (I imagine that is what the nurse meant by exclaiming “Well, you’re not on oxygen yet”). I would tell her that she has some grieving to do, sadness and anger will be visiting. She will need to grieve the loss of her future and experience the pain of saying goodbye to those she loves so dearly. I would tell her to think about what is meaningful to her and highlight those parts of her life. If her job is important, keep that job until she can no longer physically do it. If her family is important, make time for them and focus on creating quality time with them as much as possible. If there is something “she always wanted to do”, now would be the time to do it, while her body is still able to get around. Finally, I would tell her that after the grieving is done, there is a possibility for great inner peace and acceptance of what life has offered. I would offer her information on programs, counselors and other people that might be helpful to her on this journey. I would tell her that I would answer any question she had about the physical process of her illness and death whenever she was ready or needed to hear it. I would promise to be honest with her at every turn, if that is what she wanted.

None of those things I have listed are rocket science. None of those things are terribly deep or complicated. None are too specific and at risk of misleading her into false fears or hopes. All of those things are simple truths that anyone who spends time with the sick would observe over and over.

This is where being a doctor or nurse becomes very tricky. If you, as a healthcare provider, are not willing or interested in exploring the emotional sides of illness, you will be unprepared to guide your patients in a time of need. If you are not willing to face your own mortality, you will be uncomfortable dealing with those who are. This is a tall order. This requires much more from a person than going to school and getting a degree. In my opinion, this is what is required.

No matter who that patient may be, no matter how “difficult” or independent, the chances are there will be a time when they look to their caregiver for guidance. After all, aren’t they the ones that do this every day? Aren’t they the one who diagnosed this new twist in my life? Aren’t they the ones that understand how this has worked for many others in the past? There is a tremendous opportunity for this caregiver to provide a patient with a confident first step into The Sick World.

From where I sit, doctors and nurses are in an enviable position. They get the honor and privilege of being present at some of the most transformative and pivotal moments in a human life. The question is, will the practice they get in these moments be something they choose to use or something they choose to deny?


OB Doctor said...

Outstanding essay!

I'm not sure that most healthcare providers are willing to face their own mortality, which probably does make it harder for them to help patients face their mortality.

"There is a tremendous opportunity for this caregiver to provide a patient with a confident first step into The Sick World.": My hunch is that this would better be accomplished in conjunction with a patient with experience taking the first step. There is a huge gulf between taking care of a patient with a chronic/terminal illness and experiencing it firsthand.

Your writings are excellent, and I enjoy reading your blog. My unsolicited advice to you would be to consider taking a break from the blog for a while and focus on organizing your existing writings into a book. In my novice opinion, I would be surprised if you could not find an agent and get this published.

Midlife Midwife said...

Thank for for such a thought provoking blog entry. It actually is pretty hard as a provider to find the right words to say to a patient who is in emotional/physical/spiritual distress. I'm not sure that all my years of working in OB and dealing with OB problems has given me the best "experience" to counsel a patient with. I find it is much easier to talk to a patient and to help them work through things when it is a problem I have experienced first hand.

I think that is why your story is so important. You can give other patients hope, direction, advice and comfort. You will be able to touch people's lives that we as medical professionals can't.