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Palliative Care; comfortable life or dignified death!

Palliative Care; comfortable life or dignified death!

Dr. R.Kumar

President, Society for Promotion of Ethical and Affordable health Care

We all have more than 80% chance of needing palliative care (PC) in our last days. It serves as a bridge between chronic morbidity and decent demise. Less than 15% people die suddenly. Rests have a gradual end of life. Most of these people suffer enormously with pain and other symptoms. It also entails draining away life time saving of the patient or even countering debt in lieu of prolonged suffering and death.  Will it be ethical to authorize huge expenditure on patient- care just to prolong his suffering? Indulging in the luxury of aggressive, unaffordable and painful care, even in the face of total hopelessness is the bane of tertiary care centres. As per LA times even many  Americans have to depend on charity or crowd funding to meet the high costs of such care despite their medical insurance. PC may be the answer.

PC focuses on providing relief from the symptoms, pain, physical distress, and mental stress at any stage of illness. It entails paradigm shift from the mindset ‘treat the patient to the last breath, since death is seen as failure of the doctor, to acceptance of death as an inevitability’. In India the option of PC is generally looked down upon by the patients. The treating doctors see only the disease, not the human being who has it.  Pain is just the visible tip of the iceberg of suffering. What is ignored is the part below the surface—feelings of hopelessness and despairs.  While need for PC is tremendous the availability is poor all over the country. Barring Kerala, hardly any efforts have been made to develop it across the country. There has been no teaching about palliative care in medical colleges. The Medical Council of India has recently included PC in MBBS course.

What is Palliative care?

WHO’s statement on PC states that it is applicable early in the course of illness, in conjunction with other therapies, such as chemotherapy or radiation therapy, and also includes those investigations needed to better understand and manage distressing symptoms and clinical complications. PC involves the following:

  • provides relief from pain and other distressing symptoms;
  • regards dying as a normal process;
  • intends neither to hasten nor to postpone death;
  • integrates psychological and spiritual aspects of care;
  • support patients to live actively;
  • support system to family cope with the patient’s illness and bereavement;
  • enhances quality of life, and positively influences the course of illness;
  • Applicable early in the course of illness, before the diagnosis is made or after the diagnosis, pending regular treatment.
  • PC for children is total care of the child's body, mind and spirit;
  • It can be provided in community health centres and homes.

 

Kerala Model: Total-care Free of cost

 

Institute of Palliative Medicine (IPM) located in the Medical College, Kozhikode, Kerala is the pioneer of palliative care. It is the first WHO Collaborating Centre for Community Participation in PC. The institute began as a small unit in 1993 as Pain and Palliative Care Society, which in 1999 graduated to ‘Neighborhood Network in Palliative Care’ (NNPC). NNPC with army of volunteers and support of Government funding for community-based 260 units, has earned many accolades for providing total care free of cost. It involves not just relief from medical symptoms, but also emotional, social and financial support, bereavement counseling and rehabilitation of patient or family. To elaborate, here we have remarkable cases of community volunteers mobilizing resources to provide financial support to patients and their families in a range of ways from supporting children who are dropping out of school, providing food kits to the destitute, even fulfilling a patient’s dying wish to get a patient’s daughter married!   It culminated into ‘Palliative Care policy, Government of Kerala 2002’. The government came out with another landmark policy in 2008, mandating that doctors at primary health centres must be trained in palliative care, and that these centres must work in collaboration with the community organizations. It should also include a range of chronic conditions such as geriatric issues, heart failures, chronic lung diseases, mental health, chronic renal conditions, advanced neurological ailments and others that may leave a patient bed-ridden, besides cancer and AIDS patients. Kerala is the first of India’s states to relax narcotics regulations to permit use of morphine by palliative care providers.

Dedicated volunteers

The synergistic effect of motivation and knowledge, coupled with the use of local resources, has made possible the development of a network of palliative care services, available for free to terminally ill patients. Outpatient treatment with a supportive home care service was adopted as the main mode of operation. Trained volunteers from the community assisted in providing care, and family members were empowered in order to ensure continuity of treatment.  Teams including palliative nurses, Accredited Social Health Activists, National Service Scheme volunteers and local ward members visit each of the patients regularly.  In addition to home care, the patients are also given medicines and equipment such as airbed, walking stick and wheel chair, among others.  Total emotional support to the dying and her family, makes the bereavement more bearable. There are well documented studies that show ‘patients prefer to die from home, and not in hospitals, nursing homes or hospices, stripped of familiar conditions, and isolated from their loved ones’.

Last Aid course is recognized by the German Association for Palliative Medicine to take care of the persons in terminal stages. Inspiration and individual commitment has led to collective solutions for improving care for the dying. Everybody is expected to be trained in palliative care in order to be capable of caring for seriously ill and dying people at own home or other patients’ homes , rather than looking for the services of a doctor. Volunteers who support PC patients get credit hours of the services rendered, and are entitled to avail the same service, if and when required.

 

The Tribune  05th October 2019

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