The advances made by medical science have not only increased our life span but it is now possible to ensure good symptom relief.
On September 25, 2015, the Global Goals were adopted by leaders of 193 UN member states at the UN General Assembly in New York. They further built on the Millennium Development Goals set in 2000. These Global Goals aim to “build a better world by 2030” by ending poverty, promoting prosperity and well-being for all, protecting the environment and addressing climate change.
There is no doubt that with people living longer, and with non-communicable diseases on the rise, improving palliative care for people with life-threatening and life-limiting illness globally has become an imperative. It can be regarded as being a key part of Goal 3: ‘Good health & well-being: Ensure healthy lives and promote well-being for all at all ages’.
The advances made by medical science have not only increased our life span but it is now possible to ensure good symptom relief. Yet, the awful truth is that while we may be living longer today it usually comes at a terrible price. By and large, we are condemned to breathe our last in unfamiliar surroundings, separated from those we love, strapped to machines that keep us artificially alive or in unattended pain. Where is the good death?
The modern hospice movement, which is now more than five decades old and exists world-wide, originated in an attempt to provide an answer to this question. Those in the forefront of administering care to people who were dying in hospitals were appalled by what they saw and heard. Cicely Saunders, a nurse at one such hospital in Britain, coined the term “total pain” to describe the condition of her patients; pain which transcends the physical to encompass the psychological, social and spiritual dimensions of human existence and to which no attention is paid.
Palliative care, a medical sub-specialty, grew as a handmaiden to the hospice movement. There was need to find better and more effective means by which people who were in distress could be relieved of their “total pain”. It is not surprising; therefore, that palliative care began to be administered by a multi-disciplinary team comprising doctors, nurses, psychologists, and the clergy, among others. In keeping with the focus of palliative care, members of the family were also considered part of the team as our families are our most committed and dependable caregivers.
As someone who has seen palliative care being practiced at close quarters, I know that given the right kind of care it is possible to help people to continue to live with dignity from the time of a life limiting diagnosis onwards. It is about ensuring quality of life throughout a debilitating illness and not just at the end of life. Besides a skilled team, it requires human attributes like patience, courage and a non-judgemental attitude. Communication is the key. This is not just about instructing people but listening to them with total attention and respect. For what is meant is often not voiced; while what is said is not necessarily what is meant.
Elizabeth Kubler-Ross, the renowned psychiatrist, drew our attention to the emotional stages that a person dying goes through: denial, isolation, anger, bargaining, depression, acceptance and hope. In reality, people go in and out of these stages several times and even experience more than one simultaneously. Through all this, there is a real struggle to hold on to hope and our business is to respect this even as we gently move the person on to accept the reality. This does not mean, however, that we lie or make false promises.
Wanting to set one’s affairs in order, writing a will, meeting people to mend relationships or to say goodbye are requests that are often not entertained because they are too painful. And yet, unresolved issues can cause people more physical pain than one can imagine. This again is where a neutral third person, trained in communication, can play a pivotal role as an advocate for the dying person and help educate the family.
This is not to say that the physical side is to be ignored. Far from it. Symptoms that cause pain and discomfort must be dealt with speedily. The value of following the WHO ladder for pain control cannot be over emphasised, with opioids such as oral morphine playing a critical role. It is unfortunate that due to out-dated regulations, misconceptions and lack of trained doctors, those who need opioids for pain continue to be deprived of them. The family, too, need to be instructed about the nursing aspects of care. Our nurses at CanSupport spend time teaching the family wound management, catheter and mouth care, prevention of pressure ulcers and even how to administer simple injections.
Surely the spiritual questions are the most challenging. Questions such as: Who am I? What will happen to me after I die? We have no easy answers and neither should we pretend to have them. Each one of us will have to make his or her sense of it all and find our own meaning. What we as concerned caregivers can do is offer our constant presence and understanding.
To summarise, the right to good health and well-being in order to have meaning must extend from the cradle to the grave. This can only become a reality if countries around the world commit to meet the global health goals by including palliative care in their medical delivery systems. In India, palliative care must enter the curricula of medical and nursing colleges, oral morphine must become more accessible with more and more doctors trained to use it and, finally, policy makers must make palliative care part of universal health care so that it becomes affordable for all.
Ensuring healthy lives and promoting wellbeing for all at all ages by 2030 is an inspiring goal. Enabling people to live and die well must be a key part of addressing this. By 2030, there must be a major transformation. Citizens must be empowered to demand, drive and deliver palliative care for themselves and their communities.
The writer is president and founder of CanSupport
— Charkha Features