Being diagnosed with a serious, life-altering illness can be devastating, confusing and overwhelming. You are suddenly faced with monumental decisions about treatment, long-term care, and possibly even end-of-life resolutions; likewise, if a family member who has become gravely ill and you are forced to make some of those decisions on their behalf. That’s when you need the help of a highly trained specialist like Dr. Anthony Mistretta, palliative medicine physician at Cleveland Clinic Indian River Hospital.
“My goal is to support patients and families as they navigate through their most difficult health experiences,” said Dr. Mistretta.
Palliative care is often confused with hospice care, but while they dovetail into each other and palliative care can be a gateway to hospice, they are not the same.
Palliative care is a general term that refers to a multi-disciplinary or holistic care provided to a patient with a serious illness to help them manage physical symptoms and emotional stressors with a focus on the patient’s goals for care, values and what is important to them.
It also strives to improve the quality of life for both the patient and the family while the patient is still undergoing treatment, for however long that takes. Not every patient who would benefit from palliative care needs hospice.
Hospice care is guided by the same principles but is intended for patients with a defined end-of-life prognosis. The difference is in the prognosis and stage of care, not in philosophy. Both are focused mainly on conditions and symptoms that can’t be fixed but can be made a somewhat better.
“The term palliative loosely means to help or improve something that isn’t working when we know that fixing or curing is no longer possible,” said Dr. Mistretta. “I may serve as a medical translator, prognosis guide or symptom manager. For example, I can help manage the pain, shortness of breath and nausea while the patient is undergoing a treatment like chemotherapy.
“The other common reason for my consultation is for the conversation about care. The doctors, patient and family may be struggling to figure out what they are trying to achieve at a time when the optimal solution would be a cure and return to full function, but that is not possible anymore. I can help them sort out what type of compromises we are talking about and how to move forward.
“Because I need a comprehensive understanding of the medical picture and what the prognosis really looks like, I spend a lot of time doing research prior to the family meeting, reviewing the patient’s chart and medical background.
“This helps me define what’s medically possible for that patient and within that scope we can figure out what goals are possible and desirable. Half my time is spent understanding the medical and what’s possible, and the other half understanding what is important to this particular patient. Not everyone’s goals are the same, so we need to figure out which goals are most important and select those that are medically achievable.
“The modern American healthcare model is to keep our foot on the gas pedal until the patient tells us to stop, with no limit to the amount of intervention,” Dr. Mistretta continued. “That might mean another round of chemotherapy, or another surgery or the introduction of mechanical ventilation or a feeding tube.
“But just because interventions are available doesn’t make them the right decision for every patient. For the sickest of the sick we have to rely on surrogates or family member to make those decisions for the patient [who can’t understand or communicate clearly], and those are very complex.
“Quality of life needs to be factored into those decisions and some of the quality-of-life restrictions may warrant refusing intervention. My job is to help decide what is best for that patient and to honor the limits set by the patient.”
Dr. Mistretta suggests having conversations with family members ahead of time and creating an advanced directive (living will) in the event something happens to you and you are unable to make decisions for yourself. Use precise language and spell out what is important to you. Formally appoint a healthcare surrogate who you trust to honor your directives. Knowing your limitations and identifying what is important to you will make the decision-making process easier on the surrogate in a very difficult time.
So, at what time do you transition from palliative care to hospice care? The patient first has to qualify for hospice by having two physicians agree that the patient is likely to pass away in six months or less, and the patient has to want hospice care, which will no longer attempt to fix or cure the condition. That means that treatment to cure the disease will be terminated and comfort care will be the focus.
Palliative care is a service provided by the hospital as an investment in the quality of patient and family experience and is covered by most insurance. Cleveland Clinic Indian River Hospital has an ambitious vision for what they want to offer in their palliative care program and recruited Dr. Mistretta to develop it.
“Our vision is to have an outpatient clinic as well as our hospital-based program,” Dr. Mistretta said. “In time we may be able to even expand it to even offer home palliative care. That requires a lot of manpower, however, and right now it’s just me, so for the time being I only consult with patients in the hospital who are facing the most complicated decisions.
“I will be recruiting more team members so our program can expand but that will take time. Our ultimate goal is to give support emotionally and spiritually in a time when offering comfort and dignity is more important that curing.”
Dr. Mistretta earned his medical degree at Tufts University School of Medicine in Boston and completed the Internal Medicine Residency Program at Rhode Island Hospital, Brown University in Providence and the Palliative Medicine Fellowship Program at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire. He is board-certified in hospice and palliative medicine by the American Board of Internal Medicine.
If you or a family member is hospitalized and struggling with difficult decisions ahead, you can ask your hospitalist or the attending physician to schedule a consult with Dr. Mistretta for guidance.