Dear Editor,

End of Life Care, are we rising up to the challenge?

Supposed, one fine day, one of us received a telephone call from a patient’s family member to request a home visit.

You have attended this patient and his family for years. You have been managing his chronic illnesses when he presented with vague symptoms maybe about 1 year ago. Eventually you had helped to make the diagnosis of an occult malignancy. He was found to be beyond surgery and underwent several unsuccessful trials of chemotherapy. Radiotherapy was performed for symptomatic relief of debilitating symptoms. He was managed by the palliative team in a hospice during the previous few weeks but he has decided to be cared for at home. The family agreed wearily. You had visited him in the palliative ward before and the palliative team had enlisted your assistance.

Are we, general practitioners/family physicians (GP/FPs), prepared for an event of this kind?

Similar to previous GP/FP authors, we wish to draw attention to a difficult and often avoided topic like this one: Death and Dying.

Death comes to us all. Together with being born, and the inevitable aging process of losing teeth and hair, and reduction of function, death affects 100% of the population.

However, dying is an “individualised” journey. For most medically trained graduates, death is commonly seen in the clinical domain. For centuries, the mainstream medical approach has taken up the challenge of how to prevent, treat, and delay this process. In Hong Kong, it is estimated to occur regularly at the rate of 147 deaths per day or about 50,000 annually in recent years.¹ The trend also suggests that, the higher the population, the more the number of people eventually joining the process, with variable duration and experiences.

As practitioners at the grass-root, we would like to ask ourselves: What is our role in the last leg of our patients’ journey?

To our understanding, the most recent article written by a local practicing GP/FP was by Hong, Lam and Chao et al in 2013² outlining the barriers for GP/FPs to provide such services to their patients. In their survey, 60% of GP/FPs themselves would wish to die at home, and nearly 80% of those surveyed agreed that they should provide such services to their patients at home. But only 14% of surveyed GP/FPs actually provided home visiting service to their patients.

Rhetorically, self-professed GP/FPs claim to provide continuing, holistic, community evidenced based clinical care. Then, why is it that not many practitioners offer their services to their patients during a time when our patients and their family are in crisis? Is it a problem of having lack of skills, feeling of inadequate knowledge or inappropriate attitude? Or a mixture of all three, or more?

Some of us would say that it is a fact most deaths now occur in hospitals, we being community based practitioners, have a limited role. However, surveys revealed that more and more people at the end of their lives wish to be given a choice to spend their limited remaining time with people they are close to and in a place that is familiar to them. Hospitals also recognize that palliative care improves the quality of life of dying patients and their families. It also reduces unnecessary procedures and resource utilisation. Hospices are good alternatives to hospitals. The opportunity to stay home is also becoming an attractive alternative for the suitable family. Chung et al³ found that in a population based survey, 31% of participants would prefer to die at home. For that to be possible, among other things, community-based practitioners need to collaborate with hospital palliative physicians and hospice colleagues so patients can transit with the minimal of fuss and maximal peace.

Psychologically, dying is a very personal journey. It is a process with its terminus to permanently separate physical intimacy to those we love and care, to end our physical enjoyment on earth and to witness inevitable losses of valuables which have been important throughout our lives. It can be a process of continuous feelings of losses, overwhelming fear of uncertainty and loneliness, and helpless desperation for self-containment amidst the long sufferings of physical pains and incapacities.

How well do the under-graduate medical curriculum and professional training programmes prepare future medical service providers in handling the dying process of their patients?

1. Do they understand the psychological needs and complexity of emotional changes of patients across the stages of dying?
2. Will the dying process affect the practitioners’ view of their patients as human beings, when the physicians see their patients gradually lose their agility, functionality and eventually their breathing?
3. How well are young adults prepared to accept death and dying which are unexpected since these experiences can be traumatizing to their own psychological well-being?
4. The importance of a ‘Good Death’ is to allow the patient and the patient’s family to have more control over the entire process of dying⁴, so that the process can be co-owned by both the patient and his/her family. How well are GP/FPs trained in understanding these family dynamics and be able to help the family reach a consensus on the active management of End Of Life Care at home for the benefits of their patients?

Perhaps it is time for our academic discipline to consider offering an important service to our dying patients (and their families) in preparing and educating ourselves, by responding to their real needs, perhaps we can better facilitate our patients’ choices in their end of life care at home.