ISSUE NO. 5: STRESSED OUT!
WORDS - NAUSHEEN N. HAKIM, DO
ILLUSTRATION - CLÀUDIA CAPDEVILA

Hearing the diagnosis of “advanced stage cancer” for the first time is stressful enough to make it hard for anyone to focus. Oncologists, doctors who specifically treat cancer patients, are very aware that patients who have just received a terminal diagnosis have difficulty retaining any subsequent information. In that moment, the patient is suddenly forced to reconsider and reconcile every aspect of the life they were living up until that point: all those travel plans, work goals, life passions, and relationships. In my first year training as an oncologist, I was taught that it is necessary to patiently repeat the clinical diagnosis and treatment plan multiple times to make sure patients are able to truly understand their disease. Life-threatening diseases present not only physical issues, but a profound type of stress that stems from existential threat. Given what we know about the negative effects of long term stress, I try to minimize the stress my patients experience by offering them access to palliative care.  

Palliative care is defined by the World Health Organization as “an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”  The very broad definition essentially means treating a person holistically, not just addressing the physical aspects of an advanced illness. 

Studies published in the New England Journal of Medicine and The Lancet have shown that patients who receive early access to palliative care report a much higher quality of life compared to patients who are receiving only oncologic care. An improved quality of life reduces stress, for both the patient and their loved ones, but early palliative care is not offered as often as it could be.

Barriers to introducing palliative care earlier in treatment stem from stigma around hospice care and end of life. Commonly, the phrase “palliative care” brings up fears that the physician is giving up or that there is no hope. It is often confused with hospice care, which is a specific type of palliative treatment focused on comfort care in the last six months of expected life. The confusion about the difference between palliative care and hospice care can make patients and their loved ones afraid that death is imminent. Doctors can understandably be wary of introducing palliative care into conversations around treatment early after a terminal diagnosis for fear of triggering hopelessness and emotional distress for the patient and their families. This is a shame; palliative care offers a multidisciplinary approach to tackle the challenges of life-threatening illnesses from a holistic perspective and no consult would be too early.

A palliative care consult will usually address a variety of issues, including defining the role of the patient within the family and how that might change, the family’s concerns and feelings about the disease, and the patient’s spiritual beliefs. It’s also an opportunity to discuss the goals that the patient and their loved ones have in terms of their autonomy when it comes to their health, and their wishes related to end of life care and death. This can include helping people access information about legal systems, ensuring that choices about funeral and after death arrangements are followed, communicating the patient’s correct name and pronouns to all medical professionals involved, and connecting them with affirming religious or spiritual leaders.

Ensuring that more patients are able to access palliative care when they need it will require two things: more open, honest conversations between patients and their oncologists and more solid evidence to confirm that early palliative care works. Then, hopefully, more patients and families will be introduced to this service earlier, thus improving their quality of life and making this difficult process a little less stressful.