The Secret Lives of Doctors

“Doctors worry about you — a lot. Not in a cowering, you-might-be-a-lawsuit-waiting-to-happen way, but more like in a, “Please, Lord, let them heal well despite the fact that they are diabetic and still smoking a pack a day, and though I know it must be hard for them to quit, I’ve asked them to stop so many times” way, or a “That specimen looks worrisome. I hope it will be fine and that they won’t need more surgery. I wonder how long it will take the pathologist to let me know?” way.”

This was an excerpt taken from a great short piece written by Starla Fitch, MD for the Huffington Post (Link). I think it’s very enlightening to the lay community about how doctors think and live their lives with the patient mostly being central to it. Although I did identify with most of the piece, I felt very drawn to the paragraph I quoted above.

As a hospice and palliative care physician I do worry a lot. I worry that I won’t be able to control your loved ones pain or other symptoms. I worry the agitation may be too severe to control. I worry that my intervention may be sedating even though my intent is just to control the pain. I worry that my prognosis of time may be way off, since you have family coming in from all over the country, even though you’ve reassured me that “I’m not God,” and “no one really knows.” I worry that you might panic and call 911 even though your loved ones wish is to die at home. And lastly, I worry that your loved ones death will not be as calm and peaceful as you hope.

Do I worry? Yes I do, but I would choose medicine every single time if I had a chance to do it all over again.

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Healing the Healer

By: HPMFellow

I’ve had the honor of serving many fascinating individuals with life-limiting illnesses. I’ve considered them some of the best teachers I’ve ever had in the nuances of medicine and life. Treating patients who come from the medical community is a particularly unique experience for me.

I’ve tried to pinpoint why it feels different – it could be the mild anxiety that someone well-versed in my field may detect my deficits. Or – conversely – maybe it’s that I’ll make too many assumptions about what another medical professional may understand about their illness, and miss an opportunity to educate. Mostly I think it’s the recognition that those who heal succumb to the very same illnesses they attempt to heal in others.

Recently, I treated a former mentor in our hospital’s palliative ambulatory clinic. I reviewed her medical data first – “Recurrent metastatic intestinal cancer, declines further chemotherapy. Please assess for symptom management.” I studied the regimens she had previously been on, her recent scans, tried to guess which symptoms exactly I’d be assessing. Then I reviewed her demographics to get a feel for educational level, and felt that chill that comes with familiarity. She was an employee at my health center. Finally I looked at the place where I should have started – her name. A familiar one. This woman was responsible for most everything I know about the delivery of obstetric health – both in my training and personal experience. I felt crushed. I let my supervising attending know I felt this way. I still wanted to participate in her care if she didn’t feel uncomfortable with the dynamics of our new roles. I knew from prior experience that she’s a humble woman, but perhaps she may feel the need to protect the privacy of her condition. He went to ask her permission first.

My mentor graciously allowed me to assist in her palliative management. To my pleasant surprise – I felt like her doctor. I know I am. But I felt like I was. I had assumed I’d still feel like her student or patient. But that role faded away, and it felt very natural to speak openly to her about her care in an empathetic and professional manner. Could this be the developing confidence and competence I’ve been working all year on?

Later that evening, however, as if some higher part of my brain knew that it was safe to let my guard down – I did. And I was crushed again – though years had separated us from our former roles, I knew I’d be losing a teacher soon, and that still affected me.

I reflected on my past experience losing a mentor of mine from medical school. We had assumed she was unsinkable because she was in her field – a self-proclaimed “Trauma Mama” of the ER. Even when she had told us her cancer had metastasized, she hadn’t slowed down – continuing to mentor students, and in fact dabbling in her own palliative medicine training. Burning brighter and brighter until her eventual end on earth.

A passage from one of my favorite books – an Arthurian metaphor for life – brought me comfort when I lost this former teacher. It reads:

“I wanted to give you a parting gift, and I could think of nothing better than this.” He pointed to the road beneath their feet…“Roads are the sign of the wizard. Or did you know that?”

“No.”

“Then remember what I say. A wizard is one who teaches by walking away, and when you can walk away yourself, you will be a wizard…. I see you don’t quite believe me,” Merlin said. “But walking away from me really is the greatest gift I can bestow upon you.”

…The very image of Merlin faded from his mind, until only a lingering voice remained, saying, “I have led you to the secret places of your soul, now you must find them again, this time by yourself.” In a moment this voice too faded away. The boy passed the bend, kicked up a puff of dust, and smiled. He suddenly knew that every time he saw a road he would think of Merlin.

My patient and current teacher emailed me later to say “It was comforting to see a familiar face.”

It was comforting for me as well.

Congrats HPMFellow

I just wanted to congratulate HPMFellow who, as of 7/1/14, is no longer a fellow but now a full fledged hospice and palliative care attending. As I mentioned in the past, I had the honor and privilege of being her hospice and palliative care mentor for 6 weeks while she was still a medical student. It was amazing to see her growth in our field within the 6 week rotation and at that time she was sure hospice and palliative medicine was for her. She’s an amazing person and showed me that she could be a great physician. I’m very proud and again just want to congratulate her. She has 4 more journal entries that I will be publishing under HPMFellow, however, if she continues to contribute, maybe she’ll change it to HPMattending or something :-).

 

The Ugly

Written by: HPMFellow

The good and the bad. I had seen both sides of death before considering a career in helping people live and die better. The love of a family that comes together to make their loved one’s passage a smooth journey. The unfortunate wedge of unresolved transgressions that can tear another family apart when emotions are running high. But the good and the opportunity to do good has always outshone the bad for me in this field as I like to think it has in life.

But sometimes I forget that even when everything is done right in a situation made to ease one’s passage surrounded by love and goodness, a natural death can still be ugly.  It’s the exception to the rule, but it doesn’t make picking up the pieces any easier.

He had just turned 39 years old. The week before he had been considering further chemotherapy for an aggressive neuroendocrine tumor that had just been discovered 6 months prior. He decided along with his oncologist that he first needed some time to recover his energy and optimize his symptoms before undergoing more aggressive therapy, and it was then that he had enrolled into our home palliative program. Within a day his wife had called his oncologist to discuss his rapid decline. They decided hospice may be the best option now.

I met this man four days ago after a weekend of accelerated physical decline. As I entered his modest apartment with my attending the first thing I noticed was his gaunt 39-year old body shifting back and forth uncomfortably from a sitting position to lying down on the mattress in his living room. The next thing I noticed was an open door down the hallway – decorated cheerfully in green and purple for what I assumed was a young girl.

“Turn it off, now,”  I thought to myself, tucking away any thoughts of my own daughter. “Turn that off, and turn on what he needs.”

I crouched down and had a conversation with the man and his family. He was experiencing terminal agitation, and had increasing pain. We gave him some more Ativan, some more morphine, and some ice chips to wet his lips. He was lucid despite it all. Joked, “I’ve seen better days” in response to the worn, “how are you feeling?” I knew I had to be careful with my words – not just because these would likely be his last hours, but also because I knew his wife would probably replay the day in her mind for weeks, and maybe even years to come.

I glanced at the man’s bright pink POLST form  – “full code,” selected across the top, signed just three days prior. I waited until his breathing became a little more regular, and he paused to open his eyes again. At a loss for words I tried the truth. “I want to ask you an important question. I understand it was your hope to become stronger to get more chemotherapy, but unfortunately your body has become too weak.“

“Is this the end?”

His wife turned her head in an attempt to hide her tears.

“It’s the beginning of the end, yes. You’re dying. You have told nurses and doctors before that should your heart stop beating, and you die that you’d like us to try to bring you back to life even if that means there’s no guarantee that it would work, and understanding that we might hurt you. Your body has changed so quickly, and I know it’s impossible to think about, but it’s more vital now than ever. I must ask – is this still what you want?”

He closed his eyes again, “Yes. Do it.” This time his wife didn’t hide her face. She asked, “Honey. Are you sure you want to die like that? In the hospital? Away from me?”

He closed his eyes again. Then slowly, “No. I don’t want that. Just let me go. Just make me comfortable.”

His wife nodded and sobbed again.

“What – besides comfort – is the most important thing to you right now?” I attempted.

“Just my family. And my friends.”

I excused myself to the next room over to give them some time together. I heard her call a couple of close friends. His parents were on their way from Arizona. We spoke to his mother-in-law who had been there to support her daughter. She told us how she had lost her spouse as well. She relayed that her daughter had just quit nursing school to be with her son-in-law during his illness. She told us the man’s daughter – just three years old – was staying with her the past few days. “How do you tell a three-year-old her father has died?”

Before I could manage a humble response her shouts filled the silence – “Is this normal? Doctor!”

The ugly. He had turned on his side and vomited profuse amounts of old blood. The life was leaving his eyes. My attending comforted his wife, and I held him steady as he took several last agonal breaths.

“Is he gone? My love! I love you. I love you.”

He died. We offered to clean the body of the man. His mother-in-law provided towels while she continued to comfort her daughter. One of the towels I used to sop up the coffee-ground blood was a toddler’s hooded towel – pink and cat-shaped. I placed it in a trash bag with the rest of the soiled bedding. Part of me wanted to try to get the marks out of the child’s towel, knowing she’d ask for it later. But I thought if the stain couldn’t lift it would be painful for both daughter and widow. It was too late to erase this memory for her. But maybe I could eliminate some reminders.

After leaving his residence I didn’t cry – atypical for me. Just reflected for a long time before driving off in my car. The breeze felt softer when I rolled down my window.  The sun’s warmth retained on my driving wheel felt kind. I watched a kid walking with his father across the street – cheerful and seemingly untroubled. An almost cruel juxtaposition to the events I had just beheld in another’s life.

At the least – I hoped that not being alone at the end gave this man and his family some degree of comfort. And I reflected on how precious is life. And how beautiful. And how ugly. And good. And unfair. All at once.

“Watching Gunsmoke”

By: PalliNP

Marie was a tough matriarch of a family with five children and had lived through the Depression and WWII rationing without complaint. She had buried two babies and one husband and went on keeping her farm and mostly fending for herself.

Here she was admitted to the hospital with advanced COPD and as part of the workup her doctor has told her that she has metastatic lung cancer. She took the news with a stony silence and the oncologist left thinking he couldn’t get through to her. Her children, now in their 60s were upset and worried but determined to honor her wishes, whatever that might be.

I had visited Marie and her sons and daughters several times and it was clear that they wanted to bring her home with hospice support, but Marie seemed withdrawn and they couldn’t get her to say what she wanted.

I stopped by her room mid-afternoon and Marie was alone. “Sit!” she said, indicating a chair next to the bed. She was watching Gunsmoke on TV, and she took my hand without looking away from the TV. We sat in silence for 15 minutes or so, and then I heard a whisper:

“I’m afraid.”

“What are you most afraid of?”

“Pain and suffering.”

“We will do everything we can to keep you as pain-free as possible; you have to tell us when you hurt.”

“I know I’m dying.”

“Are you afraid to die?”

“No, I’m afraid of what comes before I die.”

“Are you worried the kids won’t be able to take care of you?”

“Yes.”

I then told her about hospice services, particularly that they are experts in managing pain and other types of suffering. I explained that they will bring in expert help to support her kids in her care, be available by phone 24/7, and be there for them when they need it.

“OK. Sounds good.”

When her daughter returned from her lunch, we were again sitting in silence watching Gunsmoke, but Marie was smiling.

AAHPM Assembly 3/6/2010; Saying Goodbye

Leaving a conference like this is always bitter-sweet. Sweet because I miss my family and can’t wait to see them. Bitter because I’m leaving behind mentors, colleagues, old friends and new friends. It’s nice to be amongst a group of people who are very like-minded but still very unique. I didn’t appreciate this fact until I had a conversation with a medical student today and realized how diverse and unique our clinicians are compared to other specialties. Of course, we are the only specialty that has so many different paths (multiple specialties) to the same goal (Hospice and Palliative Medicine Board Certification). Also, the number of Social Workers, Chaplains, Nurses, Nurse Practitioners, PA’s and other Allied Health Professionals that come to this meeting further make it special in by bringing their unique training and experiences to the table. What other conference would have such a diverse population of health care providers. I smile to think what a Cardiology or Orthopedic Conference would look like with the above health care providers in attendance. Did I mention that I love my specialty and the amazing people who make it what it is. It was inspiring to hear the different stories my colleagues told me…moments at the bedside of a dying patient, being present for a suffering family, palliating severe pain, counseling patients about goals of care, praying with patients and families, managing symptoms of cancer patients and the list goes on and on. During the daily in’s and out’s of patient care one can easily lose sight of the big picture. We are always on the verge of compassion fatigue, but yet its brief moments in time like this that I cherish. A gathering of people who are…yes, like-minded and unique and inspire me with their stories and their heart to continue to do what I do.

Goodbye Boston, Good bye friends…until next year!

Vancouver is only 11 months away!

Spirituality in Palliative Care and Other Topics

Today at the AAHPM Assembly I attended four educational sessions. The one that made the biggest impact on me was the presentation entitled “None of Your Darn Business! Taking a Spritual History While Preserving Your Professional Boundaries, Your Rapport, and Your Pride,” by Tim Ford, MA MS CT at VCU Massey Cancer Center, Richmond, VA. Before I talk a little bit more about this, I also wanted to list the other educational sessions and what I took from them.

1. “Is it Futile to Discuss Futility? A review of the Medical Literature and Legal Precedent.” Futility is a difficult word to define and means many things to different clinicians. Many advocate because it is so politically charged that we get rid of it. One physician suggested that Futility is the other “F” word. Basically, there is much evidence from previous cases and court rulings that physicians are hardly ever successfully sued for a wrongful death when non-beneficial life sustaining treatments are withdrawn. I contended that many physicians do not want to withdraw care when a family “wants everything done,” due to the fear of litigation. Many physicians would rather practice against their better judgement and subject patients to things they disagree with because this is “what the family wants,” and they do not want to anger the family or make them feel that they are not appropriately taking care of the patient. It’s much easier to continue to “do” things to the patient than to discuss this with the family in an open and honest way. Nadia Tremonti, MD, Wayne State University and Children’s Hospital of Michigan made a good point about this. She stated that as physicians we have a certain obligation to the patient and the profession despite the fear of litigation. We understand as physicians that we have a certain responsibility to the patient and by choosing the easy way out we compromise ourselves and the integrity of medicine. Overall, a great presentation and much discussion afterward.

2. Paper Sessions. I attended the paper sessions covering the Palliative Care in the ICU. The take home message from all three papers is that Palliative Care can be beneficial to patients in the ICU setting. Some crossover points in all three papers are the following. Palliative Care in the ICU:
a. Showed a decreased length of stay in the ICU
b. Increased DNR’s
c. Decreased utilization of more “aggressive” measures
d. Improved relationships between the ICU staff and the Palliative Care team
e. Increased support for the ICU staff by the Palliative Care team
f. Improved physician understanding of the role of Palliative Care in the ICU and increased utilization
g. Increased cost avoidance for the hospital showing that Palliative Care programs are beneficial, self sustaining and enforce the “Mission” of most hospitals
h. Improved patient and family satisfaction scores
i. Other…(mostly stuff I forgot)

3. “Hospice and Nonhospice Models of Palliative Care Delivery.” The bit of information that stood out to me in this session, is that some SNF’s (Skilled Nursing Facilities) are beginning to implement a “Home Grown,” palliative care service on site. Advantages and disadvantages were discussed for this type of model and I had never really thought of this as an option. I heard of the other two models in which outside Palliative Care consultants are called in to do consults or a local hospice providing non-hospice palliative care to nursing home patients, but I was not aware of the “Home Grown” model. Lots of good discussion and it will be very interesting to see how this unfolds in the coming years.

4. Last but not least, “None of Your Darn Business! Taking a Spritual History While Preserving Your Professional Boundaries, Your Rapport, and Your Pride.” This session impacted me the most because as a fellowship trained Palliative Care Physician I had always advocated for spiritual care as an important piece of patient care, but never truly appreciated the spiritual care component until this presentation. I felt like my eyes were opened and I had a deeper understanding of spirituality in palliative care. How can one presentation make such an impact. Well, he presented several points that I had not considered and he also introduced the “Transdisciplinary” (TD) approach to palliative care rather than the more traditional “Interdisciplinary” (ID) approach. In the traditional ID approach each member of the team evaluates the patient within their “nich” of practice and shares that information with the team. By contrast, the TD approach has each member providing care in all 4 domains (physical, psychological, social and spiritual) as a “generalist” but provides “specialist” care in their area of expertise. For example, in the process of doing a full consultation with a patient, I may sit down and listen to their story (presence, connection) and learn what provides “meaning” in their life while obtaining the history of the patient. In fact Tim Ford advocates that much of the spiritual history can be taken from the patient just by listening to their story and in the process of doing the consultation without having go through a checklist. In this way I am a “generalist,” for the “specialist” (chaplain) to follow up after this information is shared with the chaplain. In the same manner he stated that he would not ignore soiled linens if he went to see a patient or ignore their excruciating pain. In fact he stated that he may not be able to address their spiritual pain if the physical pain is not adequately addressed. I have often seen this on my hospice team. I will get an occasional phone call from the chaplain stating a patient he was visiting was having increased pain. He has been trained in basic pain management to a level that he can relay pertinent information that I will use for appropriate follow up care. In this manner he is being the “generalist” and I followup as the “specialist.” I feel that this model engenders the true definition of holistic medicine. And lastly he reinforced the power of “presence.” The power of “just being” present can make a significant impact on a patient or family. I am thankful I attended this session and will take a new found interest and zeal back to my practice in regards to spiritual care.