Controversy has arisen around end-of-life care. In recent time questions were raised on the Liverpool Care Pathway (LCP) system, which is intended to ease the last hours of a dying patient. But critics are saying that LCP is a way of hastening patients' deaths. Some in the media are now calling it the "death pathway". The Care Minister, Norman Lamb, has rightly ordered a report on LCP. As with life, one of the most fundamental human rights is the opportunity to have a decent and respectable death.
Death is an inevitable enigma
"When you see
My corpse is being carried
Don't cry for my leaving
I'm not leaving
I'm arriving at eternal love"
Mystic poets like Rumi can eulogise death in this manner, but for ordinary mortals death is indeed perturbing and scary. Death is the end of our worldly life and it disconnects us from our beloved ones and the belongings and possessions we crave most. Yet, death is the only reality that is lying in wait for us; it is the only truth that we all have to confront. It is heart-wrenching to see our nearest and dearest die and it is painful to think that one day we all will have to face it. Death is frightening; the moment we are born our fate to die has become predestined.
Death is the unbeaten conqueror; it silently overpowers its prey without any mercy. It is very democratic and life's ultimate leveller. A victim's wealth, power, fame, strength, age or look does not matter. It makes no distinction between humans, animals or any other living organisms.
Death is always shrouded in mystery. Because of this inevitable but unknown fear factor most people avoid thinking of death. We celebrate birth, enjoy the fruits of youthful vigour and adulthood and appreciate the wisdom and experience of matured life. However, we try to keep away from uncomfortable thoughts of death; so are the British people who do not talk about death. We try to pretend death does not exist, but it comes in stealth and knocks at our door.
There is a nice parable which sums this up:
"Death asked life:
'Why does everyone hate me but love you?'
To which life replied:
'Because I am a beautiful lie and you are a painful truth' "
Millions of people die in the world every day. A pang of death or someone's motionless dead body on the street is not uncommon in some parts of the world where death is more frequent due to malnutrition and man-made or natural disasters. While human life and dignity are paramount in all cultures and religions this is sadly missing in those parts.
Our life is sacred from conception to death. Sacred is also the dead who lived among us. The life and dignity of every person must be respected and protected at every stage and in every condition. As with life, one of the most fundamental human rights is the opportunity to have a decent death.
This is where palliative care (from the Latin 'palliare' or 'to cloak') comes in; it focuses on the relief of pain and other symptoms and problems experienced in serious illnesses, with care and respect. The goal of palliative care is to improve the quality of life, by giving comfort and providing a support system to the person who is ill and also to those close to the patient. Palliative care can neither hasten nor prolong death. The World Health Organisation describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."
Palliative care can be delivered in any care setting - including at homes, care homes, hospitals, day care centres or hospice inpatient units. Through pain relief many hospices and some hospitals manage a patient's dying days with care and compassion and palliative drugs that are tailored to the patient's pain. Families, where available, are involved in earnest. The dear ones in many families spend time with the patient; some families prefer the patient to be at home where there is plenty of reassurance, comfort and love.
More and more people are now living longer; this is putting strains on the national budget on health care, including palliative care. There must be strict medical codes of ethics on palliative care.
Diversity of human traditions
We must educate our communities about the role and goal of palliative care. The Muslim community in east London, have been hosting a series of meetings with palliative (end of life) care professionals. On World Hospice and Palliative Care Day we initiated a momentous collaboration between faith leaders and hospices, including Richard House Children's Hospice, St Joseph's and London Muslim Centre in East London.
Our life consists of body, mind and soul; so, there is a need for physical, emotional and spiritual care. Religions tend to deal with birth and death well; as such, religious communities are generally well-equipped to deal with palliative care with an emphasis on spiritual care. Institutional religions encourage their adherents to often remember death so that they can live a righteous and spiritually enriched life. According to the three Abrahamic faiths death is not the end of life, it is a new phase of an eternal journey. With strong moral and spiritual guidelines to look after the old and frail the religious adherents try to overcome the fear factor concerning death; they tend to use the network of extended families and religious institutions.
Spiritual care should thus be provided on palliative care to those who need it. Awareness of patient beliefs could be very helpful to the care providers; it creates a staff-patient-family relationship. Although still patchy, spiritual care in the NHS is now accepted as an important ingredient in palliative care in the UK. Judaism, Christianity, Islam and other faiths have valued this enormously and are working with the health service to provide a more effective care plan.
The focus on a patient's quality of life has significantly increased in recent decades, albeit with emphasis on physical and psychological support. It is vital no community is left out from access to high quality terminal care. It is also important spiritual well being is linked with good health.
Understanding patient narratives of what constitutes a peaceful death is critical for palliative care. For this to happen doctors, nurses, and other health professionals should have basic training on spiritual care; recruitment of staff from a broad range of ethnic, religious and cultural backgrounds is also important. We need a palliative care that is universal and where all can fit in.
Dr Muhammad Abdul Bari is an educationalist, community activist and freelance parenting consultant (www.amanaparenting.com). He is currently Chairman of the East London Mosque Trust. He is the former Secretary General of the Muslim Council of Britain (2006-10) and a founding member of The East London Communities Organisation (TELCO).
Follow Muhammad Abdul Bari on Twitter: www.twitter.com/MAbdulBari
The views expressed in this article are the author's own.
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