Post Mortem

My care My Comfort: the benchmark to quality of palliative care

DIMAPUR | Publish Date: 10/9/2020 11:44:00 AM IST

 “The World Hospice & Palliative Care Day” is observed on 2nd Saturday of October every year to remember people who have been impacted by a life-limiting illness - either personally or supporting the loved one. People around the world observe this day to listen their needs, wishes and provides an opportunity to voice their concerns. This year, the World Hospice and Palliative Care Day is celebrated with the theme “My care My comfort.” Previous year, it dealt with raising awareness of patient’s rights to claim the access to palliative care services. “My care My comfort” bring us to the attention of the quality of palliative care to meet the optimal comfort of patients and family caregivers who can expect as they encounter the problems of life threatening illnesses.

WHO defined Palliative care as: “An approach to improve quality of life of patients and families facing problem 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, psycho-social and spiritual”. This definition implies that palliative care is all about improving quality of care and management of distressing symptoms. It also pays attention to the family and caring the sick relative. The palliative care team consists of physician trained in palliative care, trained nurse, physiotherapist, counselor / chaplain and social worker along with other supporting staffs. The primary objective of the palliative care team is to let patients access the best standard of care and attain the highest level of comfort. Today, while celebrating the World Hospice & Palliative Care Day, we look into the quality of care in terms of patient and their family members, the healthcare responsibilities and the basic infrastructures needed to meet the standard of palliative care.

The Palliative care physician and team are trained to care the patient and family facing the life threatening illnesses, like Cancer, Spinal cord injury, Motor Neuron Diseases (MND), advanced stage of Heart failure, Kidney disease, etc. The team ensures that the patient gets access to Palliative care services early in the course of illness; manage distressing symptoms along with specialty team during active treatment, plan for follow-up care services and help the patient and family face through the difficult phase of end of life (EOL) and help the family through the bereavement process. The best supports and comfort are possible through paying detail attention to the physical, psychological, social and spiritual pain (called as “Total Pain” in palliative care) and meeting care needs and expectations of patient and family through the coordinated works of multi-disciplinary palliative care team.

“My care, My comfort” is patient’s words and it means to claim and get the right treatment, at the right time and right place, that meets her/his comfort, feels supported throughout and does not fell left deserted especially when they go through the difficult phase when curative intent is out of sight. Palliative care includes patient and family in the decision making ensuring that they are heard and given the due attention to their concerns and fulfills their wishes. The physician works meticulously on physical pain and other distressing symptoms like vomiting tendency, weakness, constipation, etc. The physiotherapist help maintain activities of daily living (ADL) to keep patient functionally independent. The counselor / chaplain takes care of the emotional needs of patient and sees the well-being of family caregivers, helping them cope with the stress and meeting their own emotional reactions to the sickness of loved ones. The palliative care nurses are the greatest need of the hour when many patients and families are opting for home care. The home palliative care which is an essential care service to meet the standard of care and providing comfort to patient and family is mostly achieved through family caregivers and the community palliative care volunteers (which we still lack). The home palliative care which is based on the Gold Standard Framework which allow the patient and family to be cared at the comfort of familiar place, feels secured and free in their own comfort zone. Patient feel dignified by getting treatment they wished, being listened to their concerns and fears, providing privacy and being in their own familiar home, being surrounded and getting due attention as they fight the illness. As patient progresses to terminal phase, compassionate care, comfort for the patient and helping the family to have a positive memory of the patient becomes of prime importance. It is very comforting and reassuring to the family to discuss about the positive memories patient leave behind, how the family and the palliative care team tried and given the best supportive care to their patient. The palliative care ends with bereavement supports to family but the bond lingers and many reference of palliative care comes from family whom we have cared for earlier. Palliative care ensures caregivers and family members receive the best support to provide care and comfort for their loved ones at home or in care facilities deliver palliative care services.

“My care My comfort” includes caring the palliative care workers. Taking care of seriously sick patient and highly emotional charged relative needs a lot of energy and resilience. The palliative care staffs have to monitor her/ his own emotional reaction as well as the sick patient, during the death of patient, responding to difficult questions of patient and family, etc. They need trainings, retreats, holidays and respite to reflect upon and refresh their commitments. This is a noble gesture on the part of patient and family to think and reflect upon the unmet needs of Palliative care workers which policy makers and organization need to ensure caring of carer not only the family caregiver but the formal health workers. In conclusion, “My care My comfort”, to ensure the best care and comfort is available to all deserving people, palliative care services must be mainstreamed into my country’s health care system, including through Universal Health Coverage reforms. The home care expenses should be covered in the health care budget, investing in and supporting palliative care trainings. The policy makers should ensure an essential package of palliative care services for all who need the care. The integration of palliative care into national /state health systems will prove a long way to achieving My care My Comfort.

Dr Nepuni Athikho,

DNB Family Medicine, Fellowship in Palliative Medicine,

PG Diploma in Geriatric Medicine,

Eden Medical Centre, Dimapur

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