May 20, 2009

Teach Us How to Let Go

In life, some skills are taught. They are passed down through parents, friends, and teachers. These include how to swim, ride a bike, multiplication, and even basic things like eating. And then there are some things that do not have a formal teaching process. We move through life reacting and observing to pick up these untaught skills. Building experience that will prepare us for the next time. One of these untaught skills is how to deal with the end of life.

It's a sensitive topic. The end of life means death is at the door, which carries with it for all involved a wide array of complex and oftentimes painful emotions. I'll admit that it has taken me at least 10x longer to blog about this topic compared to other posts I have written. In health care, the topic of end of life is very sticky.

Health and medicine is conventionally about curing illnesses, fixing problems, and prolonging life. And many of us enter the field of health care for those very reasons. However, end of life care makes most health care providers uncomfortable because it throws a twist on a core belief: medicine allows people to live life to their fullest potential.

In a WBUR special titled: "Quality of Death: End of Life Care in America: Inside Out," Jim Conway, an IHI Senior Vice President and chair of Massachusetts' Committee on End of Life Care, said, most in health care believe that "doctors are not in the business of death, they are in the business of hope." If I am not feeling well, I do anything possible to feel better and reach out to medicine for help and hope. When I've caught a cold and have difficulty breathing through my stuffed nose, I take some pills to decongest my nose. If I'm experiencing lower back pain, I seek physical therapy to help realign my hips and spine. In these cases, the medical remedies are restoring or enhancing my ability to live my life to its fullest potential. As Dr. Jim Januzzi was quoted saying in the WBUR special, "The default is to do everything. Americans view medicine as a way to avoid deaths."

Medicine is a business of hope. That's what we've been trained to believe. George Annas, Boston University professor of health law, as quoted in the WBUR special explains, "The longer we live the less comfortable we are with dying; the more we fear it and the more we look to medicine to try to cure it." Jim Conway, counters this conventional notion by stating, "A respectful death is also a form of hope." In our fear of death, we place great effort in treating people during the final weeks and months of their lives. What we often don't realize is that in doing so, we are exposing these people to unnecessary pain and suffering.

When is the right time to stop aggressive treatment? When should palliative care begin? Palliative care aims to increase comfort while giving patients and their families the opportunity to explore treatment options beyond aggressive medical care. It also helps patients and their loved ones come to terms with the inevitability of death. Palliative care includes pain management and psychological care.

From a numbers perspective, palliative care makes sense. Studies have shown that while the majority of people would like to die a quick and painless death at home surrounded by family and loved ones, 80% in the US die in hospitals, sometimes hooked up to machines. Studies have also shown that when patients are started on palliative care at an earlier stage, they use less medical care and are more satisfied in their final months. A third of Medicare's annual budget is spent on the last year of life. That's about $144 billion. 70% of health care costs are for the elderly. Unfortunately, the amount of care received does not translate to better outcomes. Research has shown that greater intensity of care at the end of life is not better for these elderly patients, but is actually worse care.

Palliative care also makes sense through the lens of patient-centered care. Elderly patients in seeking aggressive treatment oftentimes bounce back and forth between hospitals, nursing facilities, or home. Many times, the treatments leave patients feeling confused, agitated, and sick. Studies have shown that when patients and their loved ones discuss end of life issues early on, the patients are more likely to have a comfortable death and their loved ones are less likely to suffer from prolonged grief and depression.

However, despite all of these rational reasons, I think it is still easier to talk about treatment options instead of palliative care and hospice options. Health care tends to attract type A overachieving personalities. So, how do you train future health care professionals to understand that palliative care does not mean you are giving up or that you are accepting failure? How do you let go? How do you make the transition from treatment to comfort? When is the right time to make that transition? It's not easy as a family member to watch loved ones pass, so I'm sure it is just as difficult for health care providers. I am no where near practicing medicine on my own, but I am already dreading the time where I'll have to initiate the palliative care conversation with my future patient and his/her family.

This complicated situation really should have a manual, but none exists. Since there is no manual, we must rely on experience. But, we can't wait till we start practicing independently to begin learning how to navigate these situations. Conversations about end-of-life care should be happening now while we are training. We need to experience it before we start running the show. End-of-life care should formally be included in our curriculum. A rotation in hospice or a nursing facility? We should all have the privilege to join a care team that is caring for an elderly patient nearing the end-of-life. At the very least, our professors and mentors should not hesitate to initiate discussions about end-of-life care with us. Only with this experience and support will we be able to deliver the care our patients truly want and deserve.

Help us build our experience. Prepare us for the next time.

Listen to the WBUR special titled: "Quality of Death: End of Life Care in America: Inside Out. In this documentary, special correspondent Rachel Gotbaum investigates end of life care in the US. What prevents many patients from having a dignified death? What kinds of challenges do patients, providers, family, and society face when dealing with end of life care? Click here to listen.


Eva said...

Is end of life care built into your curriculum? Please share!

Jim Conway said...

Eva, thanks for your very thoughtful and compassionate post. All clinicians, in training, and as part of their ongoing clinical activities, need training in palliative and end of life care. Linda Emanuel and her colleagues have shown us the enormous power. Executives and all in heathcare also need opportunities to be grounded in and be able to talk about challenges at the end of life. As I read your post, I thought of someting I learned from a palliative care leader at DFCI/BWH: never worry alone. When faced with these issues, no matter where you are in your career, you don't have to only look to yourself for answers. Seek out palliative care professionals and others with experience to help you come up with a plan. And YES, bring on those curriculum enhancements. Thanks, Jim Conway

Eva said...

The WSJ highlights a study in the BMJ on using videos in starting the conversation about end of life care with patients. What do you all think about this study? The video shows a woman with advanced dementia. You can watch the video here. Is a video the right way to start this sort of conversation? What kinds of responses would you expect from your patients and their families? Would you feel comfortable using a video?

Eva said...

Dr. Pauline Chen of the New York Times also writes about end of life care here.

Kate said...

I was glad to read your post, Eva. I would like to add that it is important to remember palliative care for pediatric patients. This has not been a part of my nurse practitioner training, but this year I completed an independent study with the pedi palliative care nurse practitioner at our hospital. I kept a running journal and thought I would share 2 of my entries:

10/08: Today I witnessed my 1st pediatric code, which went on for an entire house and ended finally when the young boy (4years) passed. It was an experience that I will not soon forget. This was the 3rd time that this boy had coded and he had already undergone interventions that would seriously damage his quality of life. My preceptor maintained that he should have been DNR a long time ago but could never convince his medical team to discuss this with the parents as a viable option.

It is horrible that the boy had to die that way (nurses and doctors rushing around, lots of blood, and interventions until the last minute), and that the parents had to see their only child die that way. While I certainly understand that as medical professionals we need to do everything possible, but it seems that if this is taken too far, it interferes with the possibility for a peaceful death (especially if interventions, that inevitably harm quality of life, are imposed to extend life by days, not years or into adulthood).

Another note- The Dr. who was explaining the situation to the parents never actually sat down with them. They were sitting in chairs, while he was towering over them. I wanted him to sit down and look into their eyes.

Kate said...

(and my second entry)
01/09: Today was a difficult one. A 2yo with an inoperable brain tumor died and, once again, the situation was chaotic and heart wrenching. Of course watching a child die is not going to ever be a positive or uplifting experience, but it seems to me that in situations so traumatic and horrific, everything else should be in place to bring as much peace and comfort as possible to the dying child and grieving family.

The medical team had had a conversation with mom the previous night and basically conveyed that the little boy would not make it (no one knew it would happen so fast). However even though the idea of DNR/DNI was discussed, the paperwork was not yet ready and so the documents were never signed.

This morning the boy deteriorated quickly. At one point most of the medical team was working to get the mom back on the floor (she was taking a cigarette break) because her little boy was no longer rousable (they realized he would soon die). In so doing they paged her on the overhead system, and called the grandmother (who burst into tears, to which the resident responded by saying that the boy was not dying, they just wanted her to come in- I don't know why she said this because she knew the boy was dying). Within 30 minutes of mom's return, her son had died. Somewhere in the middle of this, DNR/DNI orders were put in front of her to sign. It was mayhem. Why was mom signing orders minutes before her child died? Why was the alarm monitor still on the child even though the O2 sats were in the single digits and the heart rate was wildly sporadic? Why does no one speak bluntly about death? Of course no one wants to see a child die, and everyone wants to fight until the last second. But let's be honest- what good does that really do? Whose interest is that serving? Wouldn't it be more peaceful and a less traumatic experience for the dying child (and their family) if we let them die in peace? Not that anyone is ever prepared, but we could do a better job of explaining and preparing. Yes I understand that there are sometimes medically unstable patients who deteriorate unpredictably, but there are plans for everything else in medicine (and back-ups, and back-ups to the back-up plans)- why not with dying? These should be in place AND discussed witht he family (and child, in a developmentally appropriate manner). The child deserves to die with dignity, and the family deserves to focus their attention on their child in his/her final moments.

Eva said...

Click here to read a end-of-life care and health reform slanted commentary on the blog Apollo M.D.