Clinical advancements and increasing access to global healthcare have pushed life expectancy by 26.2 years since 1950, making it seem that modern medicine is on the right path. These treatments come at a great cost not only to patients’ health but also their quality of life, with 52% of terminal patients in severe pain (Weiss, 2001). More shockingly though with 17% of the patients expressing a desire for death, (Guy M, 2006;) one wonders whether the possible solace is worth it. In modern medicine’s search for the ‘elixir of life’, has it forgotten its oath of relief from pain and suffering?
The concept of palliative medicine began in 1967 with British nurse Dame Cicely Saunders’s construction of the first hospice centre. The concept was also put forth into Kubler-Ross’s book “On Death and Dying”. By dividing death into 5 stages of death, Kubler-Ross began to educate the world about the process of death. Based on these principles, palliative care has evolved into a medical approach that focuses on prevention and relief from any kind of physical, psychological, social, and spiritual pain and suffering that is experienced by patients and their families. It allows an individual to maintain their dignity and improves their quality of life while undergoing treatment. While cardiovascular diseases (38.3%) and cancer (34%) patients require palliative care most often, it can be administered for a variety of other terminal illnesses and aggressive treatments. (World Health Organization, 2016)
Palliative care can be delivered in various forms, such as at a hospital or community care centre. In-house palliative care is difficult but family members often do it as they feel an obligation or want to feel connected to their loved ones. End of Life care/Hospice care, as defined by American health insurance plans, refers to the pain relief care given to terminally ill patients with a 6-month prognosis of survival, which results in the end of curative or experimental treatments. Paediatric palliative care is required for over 1.2 million children, and it has a special focus on the relationships between children and their families. A palliative care team is made up of a general physician, nurses, cancer and pain specialists, therapists, and a range of physiotherapists, spiritual leaders, and social workers.
Palliative care begins with the team of specialists talking with the individual, their family, and other doctors involved in their treatment to devise a plan based on resources available and the individual’s wishes. The patient’s symptoms are assessed with the Edmonton Symptom Assessment Scale (ESAS), which evaluates levels of pain, nausea, anxiety, and other factors over a 10-point scale for severity. Physical symptoms are managed with basic, readily available medication. However, as a patient’s ability to swallow is compromised, subcutaneous injections, or even rectal doses via a special catheter, may be opted over oral drugs. The analgesic ladder as developed by the World Health Organization is often used as a basis for pain management through a combination of opioids, pain relief drugs like fentanyl, and adjuvants, such as muscle relaxants and sedatives.
- Non-opioid (e.g. paracetamol) ± adjuvant (e.g. nortriptyline for neuropathic pain).
- Weak opioid (e.g. codeine) + non-opioid ± adjuvant.
- Strong-opioid (e.g. morphine) + non-opioid ± adjuvant.
Terminal illnesses are often stigmatized in society, because treatment may result in body disfigurement that can affect an individual’s self-worth, interpersonal relationships, and body image. Facing the idea of mortality may also lead to anxiety and depression for both an individual and their family. A psychosocial team organizes psychological counseling and other therapies based on a patient’s interests. For example, water, pet, or music therapy may also be experimented with to increase pain relief. Family support groups, which get the patient and his/her family in contact with similar patients and their families, may also be conducted. Such a forum encourages an increase in medical knowledge on the disease condition, allows the exchange of experiences, as well as promotes good interpersonal and family relationships. Spiritual leaders can help provide patients with care during the existential crisis and help them become comfortable with the idea of death. Bereavement support provides individuals and families with an outlet for their frustrations, anger, and grief.
Palliative care has shown to reduce pain and other distressing symptoms while helping patients and families confronting mortality. It has also shown to provide some patients with an extra 10 months of high quality of life past the original prognosis (Rowland, 2010). However, a 2017 WHO report estimated that out of the 40,000,000 people across the globe needing some form of palliative care, only 14% of them are receiving it. This leads to the question: why is it so difficult to provide basic pain relief to patients?
In the United States, over a third of hospitals, with more than 50 beds (Halwey, 2017), lack a palliative program mainly because Medicare and other insurance plans only cover hospice care but fail to cover palliative care. Furthermore, despite reducing medical costs by $4,098 for patients who were released after palliative care, it continues to be funded by philanthropy or fee-services. Lack of funding also means that the integration of palliative care units into existing hospitals is difficult, and as in-house care is too expensive, most patients do not receive it. As hospitals lack a palliative care unit, doctors/nurses are unable to do palliative care rotations and are less familiar with the process and its benefits. This means that palliative care is often not even suggested as an option to terminal patients. In addition, the absence of proper education has resulted in the spread of misconceptions such as that palliative care hastens death or no curative treatments can be tried. Most importantly, though, is the misconception that palliative care is only about patients, while in reality, it focuses much more on creating healthy family relationships and helping families through the grieving process.
All the barriers can usually be traced back to a very basic human fear, the fear of death. Thanatophobia, or death anxiety, is caused by various reasons such as the fear of the dying process, losing control, or appearing weak and vulnerable. As Elisabeth Kubler-Ross stated, “It is difficult to accept death in this society because it is unfamiliar. In spite of the fact that it happens all the time, we refuse to see it.” What this has resulted in is a society that is unwilling to accept our mortality, where doctors are overly optimistic in prognosis, and patients living in denial. Thus, people choose higher risk treatments to avoid death just a bit longer and palliative research receives less funding in hopes of a cure.
Making society accept our mortality is the first step in making palliative care globally accessible. Doing so will not only open up new funding avenues, but it will also encourage doctors/nurses to specialize in palliative medicine. Readily available palliative care will give people the courage to power through, or enjoy a few months of quality life. No matter what, palliative care has the power to realign the goals of modern medicine by keeping patients’ best interests at heart.
- C., O. T. (2010). Psychosocial issues in palliative care: a review of five cases. Indian journal of palliative care, 16(3), 123–128. DOI:10.4103/0973-1075.73642
- Gary, S. (2017). Thanatophobia (Death Anxiety) in the Elderly: The Problem of the Child’s Inability to Assess Their Own Parent’s Death Anxiety State. Frontiers in Medicine, Volume 4, Pages 11.
- Guy M, S. T. (2006;). The desire for death in the setting of terminal illness: a case discussion. Prim Care Companion J Clin Psychiatry, 8, (5):299-305. DOI:10.4088/pcc. v08n0507 .
- P., H. (2017). Barriers to Access to Palliative Care. Palliative Care, 10. DOI:10.1177/1178224216688887
- Rowland, K. &. (2010). PURLs. Palliative care: earlier is better. The Journal of family practice, 59(12), 695–698.
- Weiss, S. C. (2001). Understanding the experience of pain in terminally ill patients. Lancet, 357(9265), 1311-1315. DOI:10.1016/S0140-6736(00)04515-3
- World Health Organization. (2016). Planning and Implementing Palliative Care Services: a guide for programme managers. ISBN: 978 92 4 156541