Living in a time of bereavement: managing grief through palliative care

We find ourselves in the wake of a pandemic that has caused more mass death in a shorter period of time than anything humanity has experienced in the past 100 years. The resultant global economic shock will also be measured in mass deaths due to decreased life expectancy. The situation is exacerbated by ongoing geopolitical conflict and climate catastrophes, which are driving unprecedented levels of starvation and forced migration. 

The sad reality is that millions all over the world are either facing grief alone or are being denied the space and time to grieve. 

Many health professionals struggle to deal with and support patients and their families who have faced death and bereavement. Key reasons include the pressure of time and resources required to care for the living or not being professionally equipped through their training, especially in the science of palliative care, to manage this critical element of their professional undertaking. 

One of the many consequences is the heightened rate of burn-out and mental health challenges that so many professionals are experiencing in this unnatural situation.

The recently released Report of the Lancet Commission on the Value of Death highlights that death and dying has been over medicalised, sanitised and removed from the view of broader society.

One of the most tragic outcomes of our deep disquiet with death and our fierce commitment to preserving life at all costs is epitomised in the starkly tragic images of people dying in isolation from their loved ones. 

Of course, patients with severe contagious disease must be sequestered. The consequences of experiencing the death of loved ones in this cold way is, however, doubly traumatising for the survivors. 

This emphasises the need to integrate the discipline of palliative care into undergraduate training to better equip professionals to mitigate emotional trauma and grief in a more focused manner than simply demonstrating empathy with those affected. 

Bereavement encompasses grief, the evolutionary mechanism that helps all sentient beings to not only process the pain of the loss of loved ones, but to also enfold memory into their consciousness to allow them to continue with the life journey we all have to complete. 

This essential instinct does not always manifest, especially in times of mass deaths, as we witnessed during the pandemic. This often leaves survivors without the necessary closure and burdened by persistent and often debilitating sorrow.

Multifaceted response

Palliative care is frequently misunderstood as the management of a person’s living journey in the face of terminal disease until their death, by bringing them a measure of comfort and dignity in the process. 

Palliation certainly does this, but it encompasses so much more. 

It is also a medical and psychosocial scientific discipline and offers insights to society about the necessity of palliative care for those with life-threatening illness. 

Grief and Bereavement is a compulsory module in palliative care training. It provides deeper professional and scientific insights into the care of those with life-threatening or terminal illness. 

Many people, professionals included, mistakenly believe that grief is a single emotion. However, normal grief is a powerful, multifaceted and instinctive response of all sentient beings, as intense in their specific appreciation of loss as we are as human beings. 

Our reason and human experience tend to amplify the pain of loss through our self-constructed hierarchies of psychosocial reaction. It is unsurprising that grievous loss affects individuals emotionally and spiritually, but also visits on them both mental and physical suffering.

Profound grief can be accompanied by very real and sometimes debilitating symptoms of neurological, musculoskeletal, gastrointestinal and immunological origin. This makes sufferers susceptible to further illness, often exacerbating symptoms in people with chronic health conditions.

Moreover, about 7% of those who experience bereavement suffer from what is termed “complicated grief”. This involves the continued presence of intense symptoms of depression and a loss of functional agency that persist longer than the average grieving period. These symptoms can include an inability to focus on anything other than the death, intense feelings of anger and sadness, feelings of hopelessness and difficulty processing the reality of their loss. 

Bereavement is an inevitable life experience, but there is no need to manage it alone. Although grief is inescapable, professional support and care is available at hospices and other institutions offering palliative care. 

Moral imperative

Resolution 67.19 on Palliative Care, issued by the World Health Assembly (WHA) in 2014, states the provision of palliative care is a moral imperative of health systems and it should be integrated into all levels of healthcare. For starters, healthcare workers need to be trained and resourced to provide palliative care.

The science of palliative care is evolving, like the rest of the practice of medicine. The development of instruments that can attenuate the suffering occasioned by life-shortening and terminal illness is perhaps one of the most innovative areas of medical research today, at a time when the focus on healthcare has never been as acute in the modern era. But the innovation is not confined to the cold, hard and factual rigours of research. 

It is also the evolution of how life and death are valued in the modern healthcare delivery system, in which the priorities in the hierarchy of care swiftly change.

South Africa is endowed with centres of excellence and deep expertise in palliative care. If hospices, palliative care centres, private and public healthcare institutions are enjoined in this common vision, patients will benefit immensely and ensure that the high-minded objective for World Hospice Palliative Care Day on 8 October, that of “Healing Hearts and Communities”, is realised. DM/MC

Dr Aslam Dasoo is the chair of the Hospice Palliative Care Association (HPCA) and the convenor of the Progressive Health Forum, a national advocacy network of health professionals and experts concerned with the state and responsiveness of the South African health system. He graduated in 1986 from the Nelson R Mandela School of Medicine, UKZN. His career experience spans professional practice, private enterprise and public policy.