By: Amanda Peterson
Consider for a moment what the ideal medical specialty might look like in practice. Doctors who visit you at home? Nurses on call 24/7 to answer questions or visit in the case of crisis? Care that is individualized to you and your specific situation? Help and support for your family? What might medical care in America look like if this specialty existed?
You may be surprised, but there is a medical specialty that includes all of these items and more: hospice. Yes, I said hospice, the care you receive when you have a terminal illness. Did you know that every patient who chooses hospice care has access to a physician, nurse, social worker, chaplain, home health aide, and a volunteer if they desire it? This interdisciplinary team, as it is called, focuses on providing holistic care to every patient who comes into hospice. Patients can pick and choose from the list to suit their own personal preferences and needs. If a person is not religious and does not want to see a chaplain, they don’t have to; if they change their mind as death approaches and they’re experiencing spiritual angst, the chaplain will come and provide comfort and counsel.
Hospice physicians and nurses are experts in pain and symptom management, and they begin working from day one to get a patient’s pain and discomfort under control. Every patient’s medication profile is different because each patient is treated as an individual, not as a disease or a number. Nurses visit approximately once a week, seeing patients wherever they call home, whether that is at a nursing home, assisted living facility, or their own house. Those visits are not a standard medical visit; rather, the nurse spends time talking with both the patient and family, assessing medical needs but also checking on their emotional status, spiritual needs, and physical needs. They bring these observations back to the team, and together they assess whether any changes need to be made. These changes could be an increase or decrease in medication, spiritual distress that needs to be dealt with, final arrangements that their social worker needs to help with, physical needs that could be met by either a home health aide or a hospice volunteer, and more.
Each part of the interdisciplinary team has an important function in caring for hospice patients. Social workers are there to help with emotional support and the family dynamics that so often accompany terminal illness and approaching death. Chaplains are there to support existing spiritual beliefs and to help patients and family members process what they are experiencing. Home health aides provide help with all the tasks of daily living that become difficult as disease progresses; this may include helping with showers or baths, changing bedding, doing laundry or dishes, or helping with other tasks around the home. Volunteers are there to provide companionship to patients and respite for caregivers who need to get out of the house. Combined with the expert pain and symptom management provided by the hospice physician and nurses, hospice patients truly have a team of people focused on every aspect of their care. Is it any wonder that a study conducted at Massachusetts General Hospital in 2010 found that terminal lung cancer patients who utilized palliative care and hospice services lived 25% longer than those who didn’t? (Gawande 178).
Since such a specialty exists, why don’t more people choose to utilize it and reap the benefits offered? The answer is complicated: we are a society that denies death for as long as possible, our doctors don’t want to admit failure, families don’t want to “give up,” and the list goes on and on. The truth of the matter is that terminal illnesses exist, and unfortunately, people are going to continue receiving these difficult diagnoses. The question becomes whether we will encourage our loved ones to call the people who can help when they receive that difficult diagnosis.
Gawande, Atul. Being Mortal. New York: Metropolitan Books, 2014. Print.