By Margaret Y. Jones, MA, BCC
Imagine for a moment that you have a car you depend on daily to transport you to work and anywhere else you wish to go. You have had this car for quite some time, you have taken care of it (and it has taken care of you); you are just about to make your final car payment. Suddenly the “add oil light” appears for no apparent reason. You check the oil level and find it to be normal and continue to drive the car. Days later, the headlights stop working. It is urgent that you take your car to a mechanic because you are now unable to drive at night. The first mechanic that inspects your car tells you that a very expensive part needs to be replaced. This part, you are told, will correct the “check engine light.” But the “check engine light” was never on, you explain. Is he not listening? You now search and find a second mechanic, who keeps your car for two days and afterward assures you that everything has been corrected. Trusting what you have been told and having little knowledge about car repair, you pay him a high amount of money. Driving away from the mechanic’s garage, you discover that your car is making a new noise. Fortunately, the garage is still open and you take the car back where it is found to have a loose hose. The problem is corrected and you cautiously drive on your way. Two days later, the noise once again appears. It is a holiday weekend and the garage is closed. What will you do now, and who will you call? The car crisis places you in unfamiliar territory; one of vulnerability, loss of independence, and a sudden need to rely on those you would not ordinarily ask for help.
Imagine now, that the vehicle is your body. You have not been feeling well for quite some time, but keep on going. When your health continues to worsen over time, you decide to see a doctor to try and diagnose the warning signals. Spending several days in a hospital, you are diagnosed with a serious, chronic, or life-limiting illness. You have surgery and are told that the symptoms of the illness can be managed. You are given treatment and sent home. Two days later, your body begins to malfunction again. There is great pain. You phone the physician and receive the answering service. Where will you go from here? The emergency department may be your only resource as the pain is intense and it is late at night, a holiday, or weekend. The acute care system is used as a safety net when there is no other support available. You now find yourself on a journey down a dark and lonely road. You are not dying, but need help in managing your pain, coordinating your medical care, assessing your options, and addressing your fears. What will you do now, and who will you call?
To have a car that does not function optimally is inconvenient and expensive at the very least. Independence is lost and the need to depend on others becomes a reality. To have a body that is in need of repair or that is in pain is frightening. As illness and disease take control, life can appear to spin out of control. We as healthcare professionals can offer meaningful, added support and coverage to our patients with an extra blanket through palliative care. The extra layer of support palliative care offers to patients and their families is significant and offers rapid rewards. In the absence of a social support system, the patient or caregivers have little to no resources other than to call 911 when in crisis. A palliative care team within the hospital system allows for broader and deeper conversations with patients and their families. We are able to explore questions, such as, “what matters most to you” and “what are the goals of care?” Highest on the wish list for most individuals is “remaining independent.” Palliative care matches services with gaps in needed care. Added focus is put on pain and symptom management, social, spiritual, and behavioral health. The palliative care team is trained to have conversations about what matters most to the patient. Evidence-based research has shown that patients who are given an opportunity to discuss their advance care planning have significantly higher satisfaction scores. Being witness to this gratitude expressed by our patients is quite humbling. I have been at bedsides where patients have kissed the hand of our palliative care physician after she asked, “what do you want/not want in terms of life-sustaining treatments?” Treating people beyond the disease and providing an extra blanket of support with integrated care is palliative care. This is asking the patient, “how do you choose to live with this illness?” Palliative care replaces ignored issues and unspoken feelings with a sacred space of compassionate listening. An unmet palliative care need may be a gap between what is said and what is heard.
“I don’t know how much you make, but I do know you make a difference.” Although unclear which member of the palliative care team this was said to by a patient’s daughter, it is evident that good work was happening. Trusting that we are all here to make a difference, and that we are a community of inspired people is what truly matters most. Investing in a palliative care team in hospitals across the nation is now critical. A palliative care team consisting of a physician, a nurse/nurse practitioner, social worker, and chaplain can provide that extra blanket of coverage. Gaps in care can be identified that can then be matched with resources. Allowing poor quality of life and excessive suffering by not providing for the broader needs of patients and families is not the kind of healthcare that makes a difference.
According to recent statistics, more than 50% of adult children do not live in close proximity of their aging parents. Patients may have several doctors, which increases the risk for poly pharmacy. There may be little to no home care support and the emergency department may be the only crisis support available. This is not quality care and not the kind of care that makes a real difference. Spiritually, as a person faces the progression of their illness, existential crises often occur. A strong palliative care team within the hospital system can make a real difference.
At its inception, palliative care was thought to be about “pain control” or “comfort care.” Some patients and families may still have a negative perception or misunderstanding of palliative care, viewing it as a “giving up” or “final stage.” Attending physicians may fear palliative care discussions will provoke anxiety or anger in their patients. Palliative care will actually build trust, establish understanding and strengthen relationships. The palliative care team can help patients and caregivers walk through ambivalence and the mystery of illness and disease. The future of healthcare is here now, and it’s called palliative care medicine.
Margaret Jones is in her 10th year of ministry with CHRISTUS Santa Rosa Hospital. She serves on the palliative care team in New Braunfels, TX, with Dr. Julia Kellcy, Deborah Calhoun, RN, and Fayemeh Hagne, LMSW.