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Does Amy Berman Have the Answer?

By now I imagine anyone who reads the current articles and discussions making the rounds in palliative care circles is familiar with Amy Berman. Ms Berman is a nurse and health foundation executive who was 51 when she was diagnosed with an aggressive form of breast cancer that had spread. Knowing that there is no cure for the form of cancer that she has at the stage she has it, she chose palliative care with the aim of addressing symptoms and optimizing her quality of life over care aimed at either cure of her disease or even prolonging life. In “going public” about this decision and what it means from a treatment perspective, she is hoping to make others aware that this option exists and should be available to all. 

I have found some of the dialogue around Ms. Berman and her decision interesting and indicative the extent to which curative care is still the default option in our society even when cure is almost certainly not going to happen and the patient has other goals. I have heard it said that Ms. Berman chose not to have “aggressive treatment” as if the care options she is pursing are not being pursued aggressively or aren’t even treatment at all.  In Ms. Berman’s interviews she makes clear that she is willing to use virtually any treatment modality including options like surgery as long as that surgery serves her goal of optimizing her quality of life. Likewise, I have heard it said that she has “given up”. Again, she has refused to engage in any attempts to cure her disease- attempts which the facts suggest strongly will not succeed. However, she is clearly not given up trying to live as full a life as she can for as long as she has.

Why the big deal over this? I think Ms. Berman has very publicly violated a basic principal which is still well entrenched in our health care culture- that cure and the length of life that is supposed to come with it is the only acceptable goal of care at least at the onset of a disease. She has declined to avail herself of the vast resources that our medical system has to pursue cure. In our current system, quality of life can be a secondary goal, but only secondary. To challenge that premise as Ms. Berman has challenges a foundational pillar on which our health system is built.

 But is Ms. Berman doing the right thing? First, we have to admit that there is really no “right” answer from a medical standpoint. Could Ms. Berman be “the one” who is cured of cancer of the kind and stage she has? Of course. Is that outcome statistically likely? No. Could someone who chooses conventional treatment have excellent quality of life? Sure and some of the responses to her interviews have documented that. However, the numbers are just odds, not certainties. Thus, the decision has to include the patient’s preferences, values, and beliefs.

Apparently, Ms. Berman, being fully informed, seems to have made what she feels is the right decision for her. Having journeyed with hundreds of patients through their decision making process over my career as a chaplain, I believe firmly that coming to one’s own decision as a patient that fits one’s own values, beliefs and life goals is really what is important. The fact that this decision seems to be working medically for Ms. Berman and giving her what she hoped for is critically important but almost secondary.  The important lesson here is that Ms. Berman became fully informed, was clear about what her values and goals for the rest of her life are, and made a goals of care decision based on those factors. If the result of this analysis led her to aggressive convention care, that would have been fine as well. Good for her! And good for the rest of us to have the opportunity to learn from her example!


Are Incentive Programs Necessary for Quality Improvement?

This week’s issue of the widely read magazine, Modern Healthcare, features a Special Report discussing the pros and cons of bonus programs to incent employees to meet various quality improvement goals.  The article opens with the story of a chaplain at Mass General reminding a doctor to use hand sanitizer with the comment, “If you don’t wash your hands, I won’t get my bonus.”

As a chaplain, it certainly got my attention. Whether the story is true or not, I get the point. That is, meeting organizational goals like using hand sanitizer needs everyone’s participation- even the chaplain’s- in order to succeed and even a small financial incentive (in this case $100) will help improve that participation.

There is no argument that meeting quality goals is becoming increasingly important to a health care organization’s financial success. CMS’s Hospital Inpatient Reporting Program has grown from 10 quality measures in 2004 to 72 measures today. CMS is proposing to add several new measures to the Value Based Purchasing Program for FY2015.

It also seems clear that the organizations who are the most successful in meeting quality goals are the ones where every department and every employee buys into the goal and seeks to support it.  There is a story told about a visit President Kennedy made to Cape Canaveral sometime following his famous promise that the US would put a man on the moon. He supposedly encountered a janitor and asked him what his job was at the facility.  The janitor is said to have responded very proudly, “Mr. President, I’m here to help put a man on the moon.”

But this then raises the point, what is the best way to align all employees with QI goals? The Special Report makes it clear that, while incentive programs have often produced good results, they are not the answer everywhere and may not be the answer anywhere in the long term. My guess is that the janitor at Cape Canaveral did not receive a bonus after the first man landed on the moon. While a bonus might incent me to wash my hands more regularly, I’m not sure it would help me be genuinely helpful, cheerful, and respectful of patients and families to a degree necessary to raise patient satisfaction scores. For that, I have to believe that treating patients well is what they deserve and what I’m called to do and that I am working in an organization which shares that value.

At the end of the day, I guess I’m a little sad that systems have to resort to financial incentives to achieve the best level of patient care. But then there is the part of me which understands that we are all human and even when we have the best of intentions, we can all use a little nudge from time to time to do what we do know is the right thing. And if that nudge means that some patient will get out of the hospital without a hospital acquired infection, I’m all for it.


The World is Naturally Lean

Working in modern North American health care, we hear more and more about reducing waste and working efficiently as an important way to both reduce cost and improve patient satisfaction. For instance, reducing the notoriously long times patients often have to wait for service in a hospital’s Emergency Department both increases the number of patients the hospital serves with a given amount of resources and makes patients and families happy. And happy patients return to the hospital the next time they need emergency care.

 One of the major systems for accomplishing this transformation is called “Lean”. Although many of the people who developed Lean were from the US, the philosophy took root in post World War II Japan because the US manufacturing community rejected it as unnecessary and undoable. Thus arose the long domination of Japanese manufacturing. Fortunately for the US economy, US companies like GE and Motorola eventually “got it” and Lean is now even fully visible in Detroit.

 One of the resistances to Lean or any other waste reduction and efficiency enhancing philosophy is that we in developed countries are so used to being wasteful that it seems completely natural to us. We find it much easier to dispose of unused material rather than find uses for it, to build vast product distribution networks which add to cost and resource usage rather than produce and use local products, and to tolerate and accept a certain amount of error in any system as inevitable rather than embrace the idea that systems can be error proofed. For someone like me who has lived in a first world country all of his life, it is easy to accept the idea that waste is just a natural part of the way the world is.

 A recent visit to Tanzania in East Africa reminded me that the natural world is, in fact, structured to minimize waste and to use all resources fully. The ubiquitous acacia tree is a good example. The tops of the trees are reserved for the baboons that eat the blossoms and fruit. The next lower level provides food for the giraffe that can reach very high but cannot conveniently reach lower branches. Elephants feed on the next lowest level which is too low for the giraffe but too high for the taller antelope who enjoy the next lowest level. Finally, the lowest branches provide food for the tiny Dik Dik, the region’s shortest antelope. No part of the tree goes unused but also the tree is not totally consumed so that it produces food again the following season. When branches and trees do die, they provide the most common source of firewood and even building material. They do not accumulate on the forest floor and provide fuel for fires.

 The carnivores have a similar system. The lions get to eat any dead animal first but male lions are territorial so the “meal” is restricted to the pride whose territory the dead animal is on. Also, the lions will only eat if they are hungry- unlike many humans- so there is often much left over. The hyenas and jackals go next. Finally, the vultures and other birds that are well suited to picking at hard to reach tissue clean up. At the end, nothing edible goes uneaten and every group has a chance at the table.  

The lesson for me is that at least much of the natural world is naturally Lean.  Just maybe finding ways to eliminate waste is the way the world was created to be.


The Different Ways of Dying in the Emergency Department.

In every hospital that I know about that has an Emergency Department (ED), the vast majority of the deaths in the institution are either in the ED or in the ICU. Further, many of the people who die in the ICU come in through the ED on the verge of dying. They are sent to the ICU, not because their lives will be prolonged by aggressive care but because the ED staff, including the chaplain, is not trained or positioned to either recognize or deal appropriately with the fact that this patient is on a trajectory which is going to lead to their imminent death. Since the process is not set up to allow the patient to die in the ED and the patient needs aggressive care to stay alive even for a short period of time, the ICU is the only option. Thus, the dying patient spends the last moments of their life hooked up to lots of machines which may even be hastening their dying and in a lot more discomfort that necessary.

Now, Dr. Garrett Chan from the Emergency Department Clinical Decision Unit at Stanford Hospital has published a very helpful article that identifies seven trajectories of approaching death in the ED: 1. Dead on arrival; 2. Prehospital resuscitation with subsequent ED death; 3. Prehospital resuscitation with survival until admission; 4. Terminally ill and comes to the ED; 5. Frail and hovering near death; 6. Alive and interactive on arrival, but arrests in the ED; and 7. Potentially preventable death by omission or commission. His conclusion is that recognition of these trajectories will help clinicians to “be more astute in their recognition of the clinical situation and react appropriately, will help identify the transitions to the EOL phase, and will help to explore the possibilities open to the patient, family and clinicians.

While a good deal of the recognition of these trajectories relies on medical information, the chaplain, because he or she will not always be intensely involved with one or two patients, can have a perfect vantage point to observe one of these trajectories unfolding and help the staff and the family recognize the clinical reality and catalyze the appropriate discussion of goals of care.


Chan GK. (2011) Trajectories of Approaching Death in the Emergency Department: Clinician Narratives of Patient Transitions at the End of Life. J. of Pain and Symptom Management.  42(6), 864-881. 


New Books of Interest

New books of real interest to the field of spiritual care and professional chaplaincy are rare.  So it is rare indeed to see four books come out in such quick succession all of which are must reads for everyone involved in spiritual and chaplaincy care.

Dr. Harvey Chochinov, Canadian psychiatrist and palliative care doctor, has published in book form his excellent work on dignity therapy (Dignity Therapy: Final Words for Final Days, Oxford Press). Dignity therapy formalizes a kind of legacy work not unrelated to what many chaplains have long done in the form of life review or ethical will. It is founded on the proposition that people at the end of life generally want to tell their stories and have those stories valued and preserved.  Chaplains should not be put off by the fact that this work is advertized as “therapy” and a “psychological intervention”. It is spiritual care. This is must reading for all members of a palliative care or hospice team.

Chaplaincy practice has long lacked a solid theoretical base. It has also been ambivalent about claiming “hope” as an outcome lest we seem to promote denial and a flight from dealing with reality. I was only recently introduced to the work of Steve Nolan, a chaplain at Princess Alice Hospice in the UK who has published a very helpful book, Spiritual Care at the End of Life: The Chaplain as a Hopeful Presence (Jessica Kingsley Publishers). Steve’s work lays out a very well explicated theory of the role of chaplaincy in being with the dying that is focused around hope. Whether you agree with Steve or not, this book will help you think more deeply and systematically about your chaplaincy practice.

Dr. Ira Byock has been maybe the most tireless advocate for the idea that dying, while inevitable, does not have to the horror that it is for many people in America today. Now he has gifted us with another book (The Best Care Possible, Penguin Group) which highlights both Dr. Byock's immense wisdom and experience  and his deep compassion and caring for those who are suffering and dying. As he says, "Dying is hard, but it doesn't have to be this hard." Be sure to read the Introduction thoughtfully. It alone is worth the price of the book.  

Finally, Rabbi Stephen Roberts, well known to many of us as a leader in our field, has edited a much needed and thorough volume, Professional Spiritual and Pastoral Care: A Practical Clergy and Chaplain’s Handbook (Skylight Paths). The book provides a wealth of material on both the foundations and current best practices in health care chaplaincy, much of it not in print anywhere else. This book should be on every health care chaplain’s shelf as a reference. (Note- while I made several contributions to this book, I have no financial interest in it.)

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