Palliative care is an interdisciplinary collaboration that aims to improve the quality of life of patients with life-limiting illnesses through symptom management, psychosocial and spiritual support. Moreover, palliative care provides supportive services for the primary caregivers of the patient and implements strategies to make the overall experience more favourable.
In these notes, we’ll go over the general idea of palliative care, what it focuses on and how an interdisciplinary team works together to create a unified plan for the patient.
The Four Illness Trajectories
When you look at the different ways that people die, you will notice four main pathways (aka. Trajectories):
Sudden Death
Terminal Illness
Organ Failure
Frailty
In the 21st century, sudden death is the least common trajectory. This refers to an unexpected death, typically brought on by an accident or an undiagnosed condition. The other three trajectories are all forms of chronic life-limiting conditions. A terminal illness such as cancer is typically diagnosed in a high functioning individual, and one would notice a short and steady decline in the patient’s wellbeing before death.
Organ failure such as heart failure, chronic respiratory disease or end-stage kidney disease all have slow pathways where the patient’s wellbeing declines gradually after diagnosis. This journey of organ failure alternates between periods of calm but declining health and periods of exacerbations and worsening of symptoms. Lastly, frailty includes conditions such as dementia which are most commonly diagnosed in patients who are already vulnerable. This would typically show a slow decline over the years.
Excluding the patients that have sudden death, one’s function status is a good prognostic tool to understand the patients’ pathway. In fact, researchers have put together several scales that can be used to determine the patient’s prognosis. The Palliative Performance Scale (2016) is one of the most favourable ones, and it takes into account the patient’s ambulation level, outward evidence of disease, self-care, intake and level of consciousness.
The Development of Palliative Care
As medical care continues to advance, chronic degenerative conditions have replaced communicable diseases as the major causes of death. In the earlier centuries, most deaths occurred at home and the dying person would have been surrounded by family members at their end-of-life journey. This allowed the family members to become part of the journey, and when the time arrives they’d mourn the loss of their loved one together. However, nowadays the majority of deaths occur in hospital settings and due to several factors, the relatives are now distanced from the journey and the primary caregivers become the hospital staff.
In addition to this, the medical industry saw a shift in the late 20th century. At this point, the physicians and healthcare staff were and in most cases still are expected to extend the patient’s life by any means possible. This idea might seem beneficial at first glance, however, it brings along many ethical dilemmas where extending one’s life might not always be in the best interest of the patient.
To this day, medical advancements and technological interventions at the end-of-life stage continue to have significant implications. Together, they shape the pathway of palliative care and the journey that a dying patient takes as they reach their last few days on earth.
Palliative Care vs. End-of-Life Care
The main difference between the two is that end-of-life care is for patients that have been diagnosed with a terminal illness, one that has a prognosis of six months or less to live. On the other hand, palliative care is for patients diagnosed with a serious life-limiting condition (ex. COPD or CHF), and it can be given at any stage of the illness. Patients can commence palliative care at the start of their diagnosis or at a stage where they would still be looking for curative treatments.
The Four Settings of Palliative Care
Institution-based: For hospitalised patients, or patients that are admitted to a long-term facility.
Outpatient-based: Patients would regularly attend a clinic for consultations or services.
Community-based: The interdisciplinary team would consult with home health agencies to deliver care at the patient’s residence.
Hospice care: This setting is not a place, but rather a philosophy. Hospice care refers to any care given to a patient at their end-of-life phase.
In the next chapters we'll be exploring all aspects of palliative care including the psychological, pharmacology and the medical/surgical side.