Doctors enter every patient encounter with one thought: cure. Often, we can cure people of some of the most complex illnesses. Our patients expect us to always try and often to succeed. We mirror that sentiment — we give our best to find the answer to all reported problems.
However, there are times we cannot cure but have to turn our focus to our role as healers. When someone has a chronic condition or a terminal illness, our focus needs to shift to what we have in our toolbox that can help people live with a desirable quality of life.
Since the 1960s when the hospice movement really began, we have been slowly changing our approach to management of chronic illness. While the stimulus for hospice medicine, dying in comfort and with dignity, has stayed constant since that time, the where and how have evolved significantly. And with the addition of palliative care, a defined medical specialty since 2006, we have been able to take the lessons learned in that nearly 60 years of hospice experience and apply them to not only the terminally ill but also for chronic disease management.
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The hallmarks of palliative care practice are to facilitate treatment choices. This begins with open dialogue with the patient or their proxy decision maker on what is important to them in life, and aligning those pillars with the goals of care. This usually involves mitigating symptoms, coordinating all aspects of care and enhancing the life the patient has to lead, regardless of how short or long that may be.
Palliative care is best administered by a multidisciplinary team that often includes the doctor, a nurse practitioner, social worker, and a care coordinator as the core group. There are many other specialties whose nearby presence and participation round out the efforts of the team such as child life specialists and chaplaincy. The team is anchored by the patient and parents so that communication of wishes and desires are clear and drive the goals of the plan the team will set forth and support.
Anecdotal success stories abound with regard to keeping children with chronic illnesses such as cystic fibrosis out of the hospital for years at a time and helping to keep kids being kids via symptom management. This allows for activities that define childhood, such as attending school.
When the journey of the patient takes him or her to impending finality, palliative care specialists can facilitate setting up a circumstance where death is in the context of dignity and peace. This can be especially useful in pediatrics due to very few hospice opportunities that exist for children. In fact, it’s estimated that only 10 percent of children who are dying can access such services or facilities in the United States.
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So while it seems clear that the expertise of our pediatric palliative care specialists is hugely beneficial to our child patients, very few actually get the benefit of their care. This is due in part to the paucity of these providers nationwide. According to pediatric board certification data, slightly less than 250 palliative care providers are focused on serving children in the United States.
Obviously, this represents a significant gap when considering that 27 percent of our U.S. children suffer from chronic illness and 53,000 die per year. In addition, it’s been culturally difficult for both the health care systems and society to shift the focus from cure to symptom management. This delays some of the requests for palliative care consults and then it may be too late in the course to realize all the benefits the child may have received.
It seems clear that we need a fix to the apparent conundrum of balancing the need for these services compared to their availability. Medical schools and payers need to value the services that palliative care brings to both patients and the health care system by managing symptoms, delineating reasonable and desirable plans of care, and keeping people out of the emergency room and hospital. Secondly, we need to think about how to leverage innovative methods like telemedicine to bring palliative care services to more sites so that patients can have the double benefit of being near home and attaining the quality of life they wish to experience, even while suffering a chronic illness. Lastly, we need a cultural revolution that supports thinking of palliation as a necessary and integral part of care, perhaps even routine, when a chronic illness is diagnosed, whether we are a consumer or provider. Not only is it allowed, it is preferable.
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The journey that any patient walks has a conclusion. It may be cure — the goal toward which we strive. But if that path isn’t possible, we cannot abandon our roles as healers and must join with the family to ensure the best care possible for the entire unit, including the patient and family, is realized. Our patients deserve the best we can offer at the beginning and end of each journey.
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Supporting the Patient Journey: The Role of Palliative Care in Pediatrics originally appeared on usnews.com
