Voices That Transform: Living Well with Serious Illness

Voices That Transform: Living Well with Serious Illness

Martha Twaddle, MD, serves as co-chair of the ABIM Test-Writing Committee on Hospice and Palliative Medicine, a unique shared leadership model reflecting the collaboration within this multi-specialty committee. She has more than thirty years of experience in the care of seriously ill people and their families, and her unique talents and contributions to the field have increased understanding of the need for a continuum of care on a national level.

She currently serves as the Waud Family Medical Director for Palliative Medicine & Supportive Care at Northwestern Medicine North Region. Her academic work includes developing curriculum, guidelines, and models of care for health care professionals to provide care for the seriously ill in all settings. She works with others at Northwestern’s Feinberg School of Medicine exploring how technology and also prescriptive nature can improve health outcomes, as well as collaborating nationally in the development of patient-family centered quality metrics. On behalf of the American Academy of Hospice & Palliative Medicine (AAHPM), Dr. Twaddle served as the Co-Chair for the National Consensus Project for Quality Palliative Care, which completed the fourth edition of the clinical practice guidelines for the field in late October 2018.

Along with many other awards, Dr. Twaddle was named one of the 30 most influential visionaries in hospice and palliative medicine by AAHPM in 2013 and received the AAHPM Lifetime Achievement Award in March 2019.

During the pandemic, Dr. Twaddle and her team have facilitated compassionate visits for family members of critically ill patients, and helped families manage painful separations due to COVID-19 restrictions.

What interests you most about hospice and palliative medicine?

I love taking care of people with serious illness and their families. I love navigating that intensity, helping with symptom control, optimizing function, and helping folks live well and feel better despite illness and rigorous treatments. I love learning and researching how to do this better—finding what new science shines the light on improving the care of people and families. And I love to teach about this type of care—it’s dynamic, full, rigorous and challenging.

Caring for seriously ill people and their families comes with loss and grief. What advice do you have for early-career physicians who are considering hospice and palliative medicine?

Recognizing just that. This is an area that asks a lot of the clinicians that endeavor to serve in this field. It is imperative that we are present in the suffering and empathetic in the process. And thus, all the more imperative that we have practices that continue to nurture and sustain us in the work. Knowing what nurtures and sustains us as individuals is critically important, and making daily choices for self-care. Developing healthy boundaries and maintaining those and working with a healthy team—that is what has helped me these past decades.

 What nurtures and sustains you, especially during the pandemic?

Thereality is this wasn’t just the pandemic—this has been a year of relentless stress and all of us have been impacted. The basics of exercise, sleep, and good eating remain critical for me—just like I tell my patients, when stressed, look at the essentials first and build then on that. I meditate every day and have for countless years. It helps me observe the stress a bit more analytically and to practice self-compassion. Being careful about what is “feeding” me—I found that too much news, too much social media (Twitter) started to make me anxious and even angry. Recognizing I had to dose that stuff, particularly around the election, was important. I am grateful for amazing friends and family: Zoom calls with folks, sharing a glass of wine and laughter. I am grateful for good literature that can be a great escape and my needlework is incredibly calming and centering. Walks in nature, even in artic cold, truly clear my head and calm my heart.

What has it been like during COVID? What guidance do you have for families on coping during these difficult times?

My team has been amazing. We pivoted early to telehealth and also helped support our coworkers in this really challenging time. We worked to establish early compassionate visits from family adorned with the necessary PPE and we facilitated video visits and regular phone calls. Families suffer the separation as do the patients—acknowledging that, being with them and empathizing is key. I haven’t seen my own mother since October—I hear them, I know that pain and can wholeheartedly acknowledge. Being present with people in this suffering is sometimes all we can do and also can make a huge difference. People are grateful to being heard and treated with compassion.

How have you supported your coworkers in this challenging time?

My team and I are often the go-tos to sort through tough cases, to talk about not just the medical challenges but the emotional, psychological, and spiritual issues that show up for us as professionals in the care of the very ill and those who are dying. Participating in care conferences and helping provide support is key. Listening and acknowledging the challenges—being safe harbor, so to speak, to name the stress. We also created “scripts” to help our colleagues communicate more effectively with families, to initiate goals of care conversations or to facilitate code status discussions. Sometimes we were on the phone with them while they spoke to their patients. For a time, we regularly did these calls for the ICU physicians. I find as a senior physician that I am often “giving permission” to my younger colleagues that it is OK to set boundaries with patients and families, and that to do so can be compassionate and highly professional.

What have you learned from your patients and their families?

Goodness—that could fill a true textbook. My patients and families are the great professors. Their experience of illness has informed me so much over these 30 years of practice. A central lesson I have learned is to ask questions and be curious. I asked first how much information around your illness do you find helpful? How do you prefer to make health care decisions? What is most important to you in your care, in your life? What is worse than death? What would suffering look for you? These questions are so critical to truly shaping patient/family centered care. Some people want lots of detail: articles to read, scans to see, charts and labs. Others don’t want to know and although decisional, ask that the heavy conversations happen with family and that’s OK. What I have learned is that I will always be learning.

What has been the proudest moment of your career?

My Lifetime Achievement award from AAHPM was definitely up there, as was being named an “International Visionary” for palliative care by AAHPM. Having my position named and endowed by the Waud family was very powerful, as I have taken care of seven of their family members. Revising and publishing the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, 4th Edition comes to mind. What is powerfully moving for me is when my students achieve leadership roles and recognition—it feels much like I do as a mom—this incredible sense of pride and gratitude to watch someone find their role, their voice, and to shine. It makes me tear up every time.

As an accomplished woman physician, whom did you look to as an example in your career? Did you have women mentors in or out of medicine?

Yes, early on I was blessed to have several women internists who served as exemplary role models as physicians, mothers, wives, sisters. I have an amazing mentor in my college biology professor who is still very present in my life—wow, she is a powerhouse and so inspirational. I am blessed with some remarkable women of strength and character in my own family and in my husband’s family. I think that being a role model as a woman in medicine is critically important—demonstrating that balancing and integrating a complex lifestyle and being clear as to values and priorities. It’s not easy but it sure can be deeply satisfying.

You serve on ABIM’s Test-Writing Committee on Hospice and Palliative Medicine. Why did you decide to join ABIM Governance?

ABIM has been an important part of my professional development from day one. I am on board with the mission and vision of certification and its role in public health and, most importantly, in public trust. I am grateful to be part of ABIM at this time in particular in its history as it is learning and growing; a healthy organization willing to engage in discussion but also clear as to its roles and standards.

You were instrumental in developing the Hospice and Palliative Medicine Examination blueprint. What did you learn during that process?

One of my favorite things to do is curriculum development and creating frameworks on which to build educational programming, evaluations, even policy. The blueprint grew as hospice and palliative medicine grew and it ended up being a bit of a Weasley house (Harry Potter). The Test-Writing Committee was eager to clean it up, making it more coherent with the fellowship training. It took 13 iterations but I am really pleased with where we landed!

What do you foresee for the future of medicine and health care?

I am already seeing the emergence of precision medicine and true person-centered medical care. What we will need more of is the more robust integration as to the social determinants of health. We cannot solve the latter with a medical model and medical issues cannot be effectively addressed without addressing the social determinants of health. The Camden project is a great example of that.

I think that palliative care has reaffirmed that good medical care is a bio/psychosocial/spiritual model and requires a team. No physician can take care of seriously ill people alone. All physicians should practice in an interdisciplinary model—not just a multidisciplinary approach. I think we have some big challenges ahead in health care as our cost must be realigned such to serve all people and we must take more of a population health approach—not a one size fits all! In particular, primary care needs more support and needs the team structure embedded within it so that all can work to the top license. The physician needs the infrastructure support to focus on where their expertise is best applied. I hope to continue to contribute to the changes I wish to see.

Are you planning to attend the virtual AAHPM Annual Assembly on February 17-19? Are you participating as a speaker, or in some other capacity?

I am attending and because of too many responsibilities I declined to do a presentation this year. It will be great fun to be a student!

Do you have any hobbies outside of work?

I love to cook and garden, hike and be on the water in a kayak or canoe. Aaah, those are rejuvenating activities. And I needlepoint every day, it is a meditative process and very calming. I love the design work, the creativity, the fibers and finishing a piece has become deeply satisfying. I typically stitch on conference calls and during webinars as I tend to pay attention better when I do (no email distraction!). During COVID I made a series of whimsical snowmen ornaments for each of my teammates, a good antidote to the heavy conversations on our Ethics Committee as we planned for scarcity protocols and crisis standards of care!

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