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It finally happened. After years of sitting at John’s bedside through multiple serious bike crashes, I had one of my own. I’ve had plenty of time to build up a ridiculous amount of smugness about why he crashes and I don’t. “John is reckless; Staci is cautious. John rides like an airplane engine on a shopping cart; Staci uses her head.”

I was mountain biking in Cherokee Park. A storm front was moving in so the temperature and humidity were dropping and it was breezy. I felt so good! Like Rose and Jack on the bow of the Titanic. I was queen of my body and that trail. I passed a real mountain bike racer and I said to myself, “Yeah, I’m a racer too.” Twenty seconds later, my front wheel hit a stick in the trail. My wheel went left and my body went right. My right hip hit the trail and a bolt of lightning lit up my hip socket. I pulled myself to the trail side and checked around. Nothing else hit, no skin lost, no head trauma, nothing. I stood up. Left leg works…right leg does not. Time to go to the hospital.

Now for the observations:

1. Thank goodness for the kindness of strangers. A woman and man found me trying to stand up unsuccessfully. They and a lone mountain biker helped me up a 100-yard grassy slope to the road. The real mountain bike racer came back and wanted to fetch his car and take me to the ED. I waved him on. No sense screwing up two perfectly good rides.

2. It can be fun when you don’t look like the typical person with your diagnosis. After the lightening bolt of pain subsided, my hip really didn’t hurt that badly. I could even move it around some, especially if I was in charge of the moving. The ED doctor wanted to do an x-ray but I don’t think he expected to find anything. It was amusing to watch John and three ED docs look at the x-ray in another room and then look through the window at me with surprise. I already had my answer when the radiology tech said I needed a chest x-ray. All the ED staff were kind to me before and after they knew I had a broken hip.

3. Anyone who touches pee, poop, vomit, sputum or blood without making an eww face is an angel to be thanked at every opportunity. During my first hospital day, I could only lift up on a bedpan to pee. The CNAs, RNs and John assisted with me kindness. I teach medical students, medicine residents and palliative medicine fellows that they must be present with any misdeed the human body, mind or soul can manifest and not make an eww face.

4. Pick good people to care for you and then trust them to do so. John’s orthopedic surgeon is in his list of favorite contacts. She is smart, talented, experienced, compassionate, and a “master of the obvious.” She answered John’s call from the ED, looked at the x-rays and recommended a surgeon who was trained in doing a total hip replacement from the front rather than the back. This meant no cutting through my butt muscles and a faster recovery time.

5. I wanted a surgeon who was smart and a good human being. I was pleased to hear multiple physicians affirm that I had picked the right surgeon for my problem. But the deal was sealed when two former OR nurses who had worked with him said he treats everyone with respect, equality and kindness.

6. Healthcare workers freak out when you talk about end of life care preferences. I told one of my nurses if I had a catastrophic complication related to my hip fracture or surgery that necessitated total care or permanent artificial nutrition/hydration, my goals of medical care would change to comfort only. I would want to be allowed to die naturally. Her body shivered and she said I shouldn’t talk about such things. Hip fractures are not benign. If you are an older woman, you have almost a 1 in 10 chance of dying in the first month. Talking about death in this situation is practical. I was able to use a wheelchair independently on my second hospital day so I visited with the RN in charge of palliative services a few floors below my room. I told her my predicament. She knows I have a completed living will declining life prolonging care in certain scenarios. John is my healthcare surrogate. She said she would be available to support John in carrying out my EOL care preferences if the need arose.

7. Sweet words matter. I care for actively dying people. When I am at their bedside, I tell them things that I would want to hear in the hours and days before death. “I am here… You are safe… You are surrounded by people who love, care for and honor you… I will be here as long as you need me.” I don’t know if these words help; dying people can’t tell me. My anesthesiologist said similar things to me when he was putting me to sleep. I will keep saying my words.

8. Take your pain meds after surgery. I thought I was superhuman since my broken hip seemed nearly painless. I refused the RN’s offer of medication. I treat pain crises often. Until I had my own, I did not comprehend how trapped inside your miserable body you feel. I did not escape until hours later when the opioids kicked in. (Editor’s note: Please note that she did not call them narcotics.)

9. Take your laxatives. Pooping is imperative.

Disclosures: The only thing I promote is good palliative care for people who seek my advice. I did have free and easy access to many physician colleagues for their expert opinions. As the perks of being a physician dwindle, I will happily claim this one.

Staci Mandrola is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes at Dr John M, where this post was originally published. Reprinted with permission. Copyright © 2014 John Mandrola

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The recent New York Times article featuring the story of Dr. Desiree Pardi, a palliative care physician with advanced breast cancer prompted a lot of responses on the NYT site (400+) as well as Lyle Fettig's post here on Pallimed.  Last night, we were able to hear Desiree's husband, Robert Pardi's view on the article and more about Desiree thoughts, actions and philosophy towards life.  With Robert's permission, I am reposting his Pallimed comment as an original post in order to make sure a more complete picture of Desiree can be understood.  Please share his words whenever you see a site, blog, or someone who may not have a rich appreciation for the complexities of her decisions or what palliative care truly means.

From Robert Pardi:

I am Desiree's husband and while I appreciate the numerous comments posted and the fact that this "story" has generated so much discussion, I need to convey that the article was very misleading and that many of the take away messages are wrongly presented.

My wife, knowing her life was going to be shorter than most spent her remaining years preaching the value of Palliative Care; something she herself accepted in her life.

The problem is most people lump Palliative Care and end-of-life care as one field of medicine. They are two separate disciplines. Second Palliative care is about providing symptom support throughout all stages of a chronic disease, it is about providing patients with a full understanding of their condition and treatments so they can live a life they want. Isn’t that what it’s all about ?

My wife never coerced people into ending a fight, she herself believed everyone should make that decision - but they have to know what they are getting into. They need to know the likely effects of treatments such as that from CPR, and know that sometimes getting on a respirator means you may never get off one. She believed in people needing to know the truth and planning accordingly.

She also believed no one should ever take away or overwhelm your coping mechanisms, her's being using me as her information buffer (inaccurately referred to as “denial” by many). We had a medical team and a wonderful oncologist for over 5 years who supported her while using me as that buffer. My wife was aware that she would most likely die in agony, and that financially I would be burdened with excessive credit card debt and emotional exhaustion. Yet, we agreed to go that route. I stopped working and learned how to function as a home health aide to support her.

I was well aware that our choices were setting her up for increased pain that she was willing to endure, but she told me that if a time comes when I need to make a choice to withdraw care that I should remember there is a difference between extending life and extending death. She said that if her body was too sick to be saved, she would not want to be "saved" if she could not function at a high level. We had that discussion, another aspect of Palliative Care - my wife lived and breathed palliative care everyday.

Please understand Palliative Care is about providing people the information they need (and avoiding false hope) so each and every one of us can make a decision about how we want to deal with a chronic disease. It is about quality in life and quality in death and tailoring a medical plan to achieve those goals.

She did not want Palliative care to visit with her in Boston because it overwhelmed her coping mechanisms, because she wanted me to be the buffer - not because she did not believe in it. Note that you are reading quotes from countless hours of being interviewed; their true meaning is lost in this "story".

One thing my wife wanted was for people to learn, to discuss, to explore the concept of palliative care based on her illness and I am thankful so many of you are discussing.

Rob Pardi

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In an effort to better understand what guides people to practice in hospice and palliative medicine, we are beginning a new series called 'Origins' featuring doctors from different primary specialties.  Obviously the majority of physicians in the field are from Internal Medicine and Family Medicine (as evidenced from the first year of board certification in 2008.)

The first edition of Origins is written by my colleague Pam Harris, MD who is an associate medical director with me at Kansas City Hospice and an ordained minister.  She recently passed her Physical Medicine and Rehabilitation boards and is board certified in HPM. 


To contribute to an upcoming Origins blog post please email me at christian@pallimed.org. We need representatives from any of the following specialties: psych, neuro, anesthesiology, radiology, EM, surgery, OB/GYN. 

Take it away Pam!

Thanks to my friends and colleagues at Pallimed for the opportunity to launch its “unconventional” guest blog event!

“Why would a Physical Medicine and Rehabilitation (PMR) physician specialize in hospice and palliative medicine (HPM)—isn’t that the exact opposite of what you were trained to do?”

I get that question a lot, especially from my PMR colleagues. My dearly beloved mentor looked at me with disappointment when I went to seminary [as those great theologians, the Grateful Dead, once said, “What a long strange trip it’s been”], but he looked at me with absolute unbelief when I told him that I was going to work for hospice. It was almost as if he believed that all my training to that point had been a waste of time.

On the contrary, PMR physicians are perfectly suited for HPM! Here are the top 5 reasons why:

1. Physiatrists always bring friends. PMR was developed as an interdisciplinary field, complete with team meetings.
2. We look comprehensively at the patient and family in the entire community and psychosocial context. We can’t treat patients in isolation from their support system/caregivers and we can’t treat the patient/family unit without considering their larger environment.
3. Physiatrists are experts at musculoskeletal and neurologic physical diagnosis, pain management, bowel and bladder programs, skin care/wound management, and community resources to support our patients and families. Sound familiar?
4. We’re all about improving quality of life and maximizing function. Even at the end of life, there is room for targeted therapies that help patients do the things that they want and need to do as long as possible and that teach caregivers how to care for patients in ways that protect both the patient and the caregiver.
5. Physiatrists frequently provide care to patients with progressively degenerative and disabling conditions, adjusting treatment plans as diseases progress and patient abilities change. A Physiatrist can help provide valuable prognostic information to patients and families to help them make informed decisions about their therapy options.

I believe the biggest barrier to physiatrists considering practices in HPM is the false belief that rehabilitation and palliative care are opposites. (We rehabilitate until we can’t rehabilitate any longer and only then do we consider palliative care.)

Newer concepts of HPM look at palliation as an integral part of care, with the proportion of curative or restorative/rehabilitative interventions varying with the patient’s disease, goals, and preferences regarding care. There is an art as much as a science to navigating this spectrum of rehabilitation and palliation. It is OK to acknowledge that not everything is “fixable”, even with maximum therapies and treatment of mood disorders such as depression that might affect participation. If something is not working, it is OK to stop doing it and to re-evaluate goals/treatment plans. Not all patients, even those with excellent rehabilitation potential, want to spend their time and energy trying to achieve the goals we encourage them to adopt.

It’s important that we help patients balance their expenditure of time and energy against their likely payoff (e.g. likely function or choice of living arrangement), helping patients understand implications of their choices within their community and psychosocial support structure. Physiatrists are perfectly situated to help patients through this process.

I would encourage my PMR colleagues to consider HPM certification—tests this fall and in 2012 are available to candidates without fellowship training along an experiential pathway. You can find requirements on the official American Board of Physical Medicine and Rehabilitation webpage here. Contact your local hospices about opportunities for clinical practice experience—it could open new doors for your practice. After all, with all our experience, how can we help but grow up to be palliative care docs? ;)