Take the Lead: Optimizing Palliative Care

While not every person with FD/MAS has pain, many in the FD/MAS community do experience significant pain, and their concerns are not always taken seriously.  Because of the varied responses that patients receive to their concerns, it’s important to understand the resources available for addressing FD/MAS-related pain

To explore this topic, we spoke to FD/MAS Medical Advisor Dr. Dan Handel, the former Chief of Palliative Medicine at Denver Health Medical Center.  Dr. Handel has spoken frequently at patient and medical conferences on managing FD/MAS-related pain.  He helped us understand how individuals can work with palliative care centers to achieve their priorities. 

Palliative Care vs. Pain Centers

Palliative care is an interdisciplinary boarded specialty in medicine that focuses on health outcomes and quality of life.  Many people associate palliative care with providing comfort at the very end of life, known as hospice, but the reality is that palliative care extends backward into chronic life-long illnesses as well.  People who find themselves in crisis, whether it is emotional, physical, spiritual, or psychological, may be able to manage their health better with the support of palliative care.  “Palliative care is very person-centered,” explains Dr. Handel, “It’s built on the belief that people can heal even in the midst of incurable, progressive, or terminal illnesses.” 

Pain is also a board-certified specialty that is thought of as much more procedure based than palliative care.  Pain centers are typically run by anesthesiologists who are often looking to mitigate regional pain such as low back or neck pain through medication and injected therapies.  This can be effective but may not necessarily be the best approach for chronic or complex pain that does not have a clear origin or underlying cause, as many in the FD/MAS community experience.

A Palliative Care Assessment (and reassessment)

Today it is common to find palliative care or pain centers associated with any teaching hospital and in most hospitals with over 250 beds.  “But if you go to 100 different centers at 100 different hospitals, you’ll find 100 different approaches to palliative care,” explains Dr. Handel.  There are big research centers with lots of resources, and there are small hospitals that make do with a part-time physician, a nurse practitioner, and volunteer time from the hospital chaplain.  “What these various programs share is a philosophy that is devoted to patient well-being and quality of life.” 

Regardless of the size and scope of the palliative care center, all patients should expect to have a thorough assessment from a trained provider who can then share that assessment and help them form a plan.  “Chronic pain associated with a rare and complex disease like FD/MAS can be a life-long and complicated challenge,” Dr. Handel explained, “Both the patient and the provider need to be willing to reassess and change course.”

According to Dr. Dan Handel, everyone should ask their provider a few key questions at any medical appointments to support their plan and progress:

  • Do you understand what is causing my problem?
  • What are you going to do about it?  What can I do about it?
  • How will we know if what we’re doing is working?
  • What can I expect from what you do? 
  • What can I expect from what I do?

When the patient understands the plan and their role within that plan, they are more empowered in the clinical setting.  A patient who is actively engaged in the care plan is likely to have explicit goals and expectations based in reality.  These goals and expectations will come in handy when it’s time to reassess: is this working, or do we need a new plan?

What about painkillers?

In light of the recent opioid epidemic, opioid prescribing is a hot-button topic that has created challenges for those dealing with pain in the FD/MAS community.  An honest, trusting relationship between the patient and the prescribing health care provider is necessary to overcome these challenges.

“Many physicians are reluctant to prescribe often or significant amounts of pain meds, and for good reason as well as fear of regulatory sanction,” Dr. Handel said.  While medication can have a place in managing quality of life, palliative care holds this as one of many approaches to try.  “FD/MAS is one of those diagnoses where the best approach is not always more pain medicine.  Palliative care centers can help people look creatively at ways to prevent or manage pain, not necessarily with increasing opiates.”

Palliative care is team care, with the patient as the lead.

In the US, palliative medicine is more likely to utilize some of the complementary, mind-body approaches to pain, such as cognitive behavioral therapy, in addition to or instead of medications.  Many palliative care centers work with psychologists, physical therapists, counselors, chaplains, acupuncturists, and other integrative medical approaches to develop treatment plans alongside the patient. 

The patient as team lead makes a powerful model of care.  “The more actively a patient engages in their care plan, and the more willing the provider is to partner with others, including the patient, and the more everyone agrees on the goals of that care plan, the better the outcomes become,” Dr. Handel explained.

Like everyone else, the lives of people with FD/MAS extend beyond the decision to have surgery or manage hormones.  Palliative care centers offer an empowering way for people to manage the complexity of their diagnosis, including pain, while keeping their priorities in focus.