Are We Really Providing Quality Care to Patients? A Physician's Perspective

Sir,

The World Health Organization (WHO) defined palliative care as “It is an approach that improves the quality of life of patients and their families facing the 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, psychosocial and spiritual.[1]” The WHO has defined main areas where palliative care should be considered. The main aims of palliative care are as follows: it should (i) provides relief from pain and other distressing symptoms; (ii) affirms life and regards dying as a normal process; (iii) intends neither to hasten or postpone death; (iv) integrates the psychological and spiritual aspects of patient care; (v) offers a support system to help patients live as actively as possible until death; (vi) offers a support system to help the family cope during the patients illness and in their own bereavement; (vii) uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; (viii) will enhance quality of life and may also positively influence the course of illness; and (ix) is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Main core in provision of good palliative care to patients is proper communication. Through this, one can get insight into another person's life and can know his perceptions, his values, beliefs, morals, or meaning to life. Knowing different aspects about a person helps to provide person-centered care rather than disease-centered care. This will help palliative care providers to proceed according to persons’ needs and make him feel connected to his surroundings. Tender, love, and care (TLC) forms the backbone to palliative care. Experiences involving TLC showed marked improvement in lives of not only patients but also their families.

In India, palliative care is still in growing phase. Many physicians and specialists have come forward to help those in need. Although currently major cities have accessible palliative care services, governing body Indian Association of Palliative Care is trying to graft these services at grass-root level. Many specialist palliative care physicians are coming out and serving their society at every possible way. However, when looking at numbers for those in need of it, it seems still underserved. Availability of opioids is again another issue barring provision of quality care. A less number of service providers automatically increase patient burden. This affects physician–patient relationship as doctors will not be able to give enough time to their patients. Hence, not all their questions are answered, leading to feeling of uncertainty about their future and families. This may increase loss to follow-up numbers impacting directly on patients’ quality of life.

When I look at a tertiary cancer institute, a number of patients being referred to palliative care services are much more than available workforce can handle. This can partly be due to increased awareness about palliative care services and partly due to lower education and poor access to medical facilities often leading to late diagnosis of disease. Increased workload per staff increases stress and can cause easy burnout, hence adversely affecting their interpersonal relationship. At routine palliative care outpatient department (OPD), usual work done is (i) managing OPD patients, (ii) day-care basis procedures, (iii) interventional procedures, (iv) counseling and end-of-life care explanation whenever required; (v) dealing with disease-related complications; and many more. Inadequate availability of trained staff often affects quality care provided.

Each person is trying at their level to give their best. Every palliative care service provider group is trying to overlook these burdens and making themselves available for patient care. Various ways by which these barriers can be overcome are (i) increasing workforce – availability of trained staff including physicians, nurses, volunteers, counselors, social workers, and other specialists; (ii) availability of adequate resources – proper government legislations and generalized opioid availability; (iii) adequate infrastructure and funding; (iv) good and effective communication between various specialists; (v) availability of protocol when a patient approaches palliative care services; and (vi) involvement of families and local general practitioners in continuation of care. There is an immense need to improvise interpersonal relationship, better working conditions, adequate time given to staff and to self to pursue hobbies and interests, and establishing stress management clinics for staff.

To conclude, it is important to develop proper infrastructure and resources, to provide self-care, and to establish stress management clinics for better patient care.