Many in our population need Hospice and
Palliative Care, but unfortunately many are not aware of it, or do not
understand its meaning. The World Health Organisation (WHO) defines Palliative
care as an approach that improves the quality of life of patients and their
families facing the problem associated with life- limiting illness, through the
prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual.
As such palliative care is not about those
who are dying, or are at end of life rather it is holistic care for those who
are faced with the challenge of a serious illness that threatens their quality
of life, activities of daily living, social relations and spiritual wellbeing.
Many have argued that palliative care has been the missing arm of medicine; if
we cannot prevent, we try as much as possible to cure but what happens if we
cannot cure? Palliative care fills this gap by dealing with the patients’ and
There is much confusion about the use of
Hospice and palliative care terms. It is important to note that hospice is the
principle, the tenet that drives the provision of the service called palliative
care. In some western countries, these terms are used to define specific stages
of life limiting illness for the sake of payment support. Most service
providers in the world and also in our country will use Hospice to their titles. Others will use Palliative Care Units/
services/ teams. It does not really matter what is in the title, it is the
service and focus that is common to all.
The focus of palliative care is the patient
and their family. It is active care geared towards reducing illness burden,
relieving suffering, and maintaining quality of life from the time the
diagnosis is made. Life-limiting illnesses include cancer, heart disease,
respiratory disease, kidney failure, HIV/AIDS, dementia, stroke and any other
illness presenting with multiple symptoms and leading to a decline of a
patient’s quality of life.
It is worthwhile to note that as
Non-Communicable Diseases such as mentioned here increase so is the need and
demand of relieving suffering emanating from them. As such, the expression
terminal illness, or terminally ill are no longer being used in references to
patients rather the term life-limiting illness is preferred.
The mainstay of palliative care is symptom
management and supportive care. These symptoms include pain, shortness of
breath, weight loss, fatigue, constipation, nausea and vomiting, loss of
appetite, difficulty sleeping, constipation and wounds. These can be managed
even as you undergo other modalities of treatment. Accordingly, palliative care
helps the patient carry on with their daily life, improves ability to go
through medical treatments, helps patients and families better understand the
condition and also assists in choice for medical care. In short, patients who
access palliative care early can expect the best possible quality of life.
The benefits of early palliative care are
many and include pain and other symptoms treatment, improved quality of life,
assisting patients and families cope well with life-limiting illnesses with
full knowledge of assistance that can be provided as trajectory of illness
changes, helps patients make decisions on the most appropriate treatment and
interventions for them at this stage and avoid unnecessary and costly
undertakings, assists patients make important ethical legal decisions that
greatly enhances family cohesion and shared decision making.
It has also been shown to enhance quality of
health care, avoid unnecessary hospital or critical care admissions, and reduce
cost of health care for patients and families, health institutions and the
nations at large. With it, the load on health care providers of making
difficult decisions as illness progresses is reduced and has been indicated as
a way of preventing stress and burn outs for health care workers.
Interestingly, studies have shown that patients who access palliative care
early during their illnesses live longer than those who don’t with one study
concluding a longer life of over two months.
For the service to be available and
accessible, policies towards its development and availability, accessibility,
affordability and understanding of essential drugs including opioids need to be
urgently made, training of health care workers and those in training is
urgently needed since this has not been part and parcel of the mainstream
health care training and service provision. All health care facilities need to
set up palliative care services.
Fortunately our country is on the right
direction towards this end, but much more is yet to be accomplished. The
community at large also needs to be aware of the importance and availability of
this service. We all need to work together towards the realization of this goal
for we would all want the best for our families and ourselves when we face this
challenge soon, we will all be saying that I have a family member, a friend, a
neighbour who is going through this.
Genuine care and support for people with distress still remains the most powerful medicine that we often don't utilise enough. There is therefore need to create awareness and boost attitude change towards this condition.
Dr. John Weru is a Palliative Care Physician at Aga Khan University Hospital, Nairobi