“Guidelines for enhancing Access to Palliative Care: A Project Proposal”

Palliative care is a crucial aspect of healthcare that focuses on improving the quality
of life for individuals with serious illnesses. However, access to palliative care services
remains limited in many communities, resulting in unnecessary suffering and inadequate
support for patients and their families. This project proposal aims to enhance access to
palliative care by addressing barriers and implementing strategies to ensure comprehensive
and equitable care for all.

Palliative care is specialized medical care that focuses on providing relief from pain
and other symptoms of a serious illness. It also can help you cope with side effects from
medical treatments. The availability of palliative care does not depend on whether your
condition can be cured. Inequality of access to palliative care and symptom relief is one of
the greatest disparities in global health care Currently, there is avoidable suffering on a
massive scale due to lack of access to palliative care and symptom relief in low- and middle-
income countries. Yet basic palliative care that can prevent or relieve most suffering due to
serious or life-threatening health conditions can be taught easily to generalist clinicians, can
be provided in the community and requires only simple, inexpensive medicines and
equipment.

For these reasons, the World Health Assembly (WHA) resolved that palliative care is
“an ethical responsibility of health systems”. Further, most patients who need palliative care
are at home and prefer to remain there. Thus, it is imperative that palliative care be provided
in the community as part of primary care

Palliative care teams aim to provide comfort and improve quality of life for people
and their families. This form of care is offered alongside other treatments a person may be
receiving.

Palliative care is provided by a team of health care providers, including doctors,

nurses, social workers, chaplains and other trained specialists. The team works with you, your
family and your other providers to add an extra layer of support and relief that complements
your ongoing care. Palliative care may be offered to people of any age who have a serious or
life-threatening illness.
What is palliative care?

WHO defines palliative care as the prevention and relief of suffering of adult and
paediatric patients and their families facing the problems associated with life-threatening
illness. These problems include physical, psychological, social and spiritual suffering of
patients and psychological, social and spiritual suffering of family members. Palliative care.

Entails early identification and impeccable assessment and treatment of these

problems; enhances quality of life, promotes dignity and comfort, and may also positively
influence the course of illness;

Provides accompaniment for the patient and family throughout the course of illness; n
should be integrated with and complement prevention, early diagnosis and treatment of
serious or life-limiting health problems; is applicable early in the course of illness in
conjunction with other therapies that are intended to prolong life;

Provides an alternative to disease-modifying and life-sustaining treatment of

questionable value near the end of life and assists with decision-making about optimum use
of life-sustaining treatment; is applicable to those living with long-term physical,
psychological, social or spiritual sequelae of serious or life-threatening illnesses or of their
treatment;

Accompanies and supports bereaved family members after the patient’s death, if
needed; seeks to mitigate the pathogenic effects of poverty on patients and families and to
protect them from suffering financial hardship due to illness or disability; does not
intentionally hasten death, but provides whatever treatment is necessary to achieve an
adequate level of comfort for the patient in the context of the patient’s values; should be
applied by health care workers at all levels of health care systems, including primary care
providers, generalists and specialists in many disciplines and with various levels of palliative
care training and skill, from basic to intermediate to specialist;

Encourages active involvement by communities and community members; n should

be accessible at all levels of health care systems and in patients’ homes; and n improves
continuity of care and thus strengthens health systems.
 Features of palliative care

Background and Rationale:

As per WHO, Palliative care is 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
is required for patients with a wide range of life-limiting health problems. The majority of
adults in need of palliative care have chronic diseases such as cardiovascular diseases
(38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes
(4.6%). Patients with many other conditions may require palliative care, including kidney
failure, chronic liver disease, rheumatoid arthritis, neurological disease, dementia, congenital
anomalies and drug-resistant tuberculosis.

As per WHO estimates each year, an estimated 40 million people need palliative care, 78% of
whom live in low – and middle-income countries. Worldwide, only about 14% of people who
need palliative care currently receive it. Palliative Care, when indicated, is fundamental to
improving the quality of life, well – being, comfort and human dignity for individuals. It is
the responsibility of health system and health care professionals to alleviate pain and
suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or
condition can be cured. If cure is not possible, palliative care provides essential care resulting
in pain relief, control of symptoms, and the minimising of suffering. Figure below illustrates
a “continuum of care” for cancer, HIV/AIDS, and other life-limiting diseases.

Palliative care can be delivered in a variety of ways including hospice care, in-patient
care, outpatient care and home-based care. Home based palliative care services take care to
the doorstep of the patient. This is where people are most comfortable at the end of their
lives, surrounded by their loved ones. It is also well suited to conditions in India where a
family member is usually available and willing to nurse the sick person. It provides care
givers with the backup and support needed to plan care and to prepare for what lies ahead
during the course of a long and potentially life-threatening illness at home. It also helps to
develop a system of strong social support in general.

Educating and supporting them would not only enhance care and quality of life of
patients but also contribute to longevity. Comprehensive care and support packages can be
developed, to maintain the continuity of care at home by family members and relatives.
Through education on nursing, infection control, care of bed-ridden patients and end-of-life
care, they can be empowered to care for patients in a manner customized to their individual
circumstances and resources.

Service Delivery Framework:

Individual/Family/Community level:
As part of the population enumeration and empanelment process, ASHAs will identify
bed-ridden patients and others needing palliative care. Such individuals would be visited by
the Multi-Purpose Worker (MPW)/Community Health Officer (CHO) for a further
assessment using the Palliative Care Screening tool.
MPWs, ASHAs, Community volunteers and family to be trained in ‘Communication
skill. ASHAs and volunteers would undertake periodic, home visits to the patients and
support to the patient and family members. Families will be assisted with routine home care,
simple nursing skills and accessing various service as needed including mobilization of local
resources.
ASHA is expected to play the following role in providing palliative care:
 Create awareness about palliative care, First level Screening of
patient/families for potential palliative care needs
 Identify and refer patients to the Community Health Officer (CHO) as
required.
 Identify community volunteers for palliative care.
 Work with MPW to deliver basic patient management services.
 Provide general support to the families/patients.
 Escort the patient/family during initial visits to ensure better liaison between
beneficiary and service providers
 ASHA will continue to visit the beneficiaries identified by her for Palliative
care services.
ASHA and MPW will utilize meetings of the Jan Arogya Samiti/Village Health
Nutrition and Sanitation Committee/Mahila Arogya Samiti (VHSNC/MAS) to raise
awareness about the needs of palliative care patients, and mobilize individual and community
level support, including accessing assistance available through other Government
programmes.
The CHO will undertake social and behaviour change communication effort in
general community and specific groups (teachers, panchayat members, NGOs, youth groups
and women self-help groups) in order to recruit volunteers for palliative care services in
her/his HWC coverage area.
ASHA and MPW will identify a group of volunteers in her service area. Volunteers
could be drawn from Youth Groups, Mahila Mandals, Co-operatives, Non-Governmental
Organizations, etc. A social behaviour change communication training of such volunteers
could be undertaken by the CHO /Staff nurse or Medical Officer at HWC – SHC or
PHC/UPHC. Willing volunteers shall also be trained in simple nursing skills. The list of
trained volunteers to be displayed prominent locations in the HWC area including the health
facility, schools, Anganwadi’s, ration shops, panchayat office etc to enhance the credibility
and pride in the volunteer. Certificates shall be given to the volunteers for providing home
based palliative care.

Health and Wellness Centre – Sub Centre Level:

Home-Based Palliative care Services: The Palliative Care team comprising of CHO, MPW,
ASHA and Volunteers should conduct Home-Based palliative Care Services to those in need
of ‘home-care’. Although the visit is need based, the team shall endeavour to have a fixed
schedule for visits to different patients to assure continued care
 Home Based care must be ably supported by a home visits by health care
professionals trained in palliative care and by linkages to day-care centres and or
hospices to manage situations that are difficult to handle at home.
 The CHO will be provided a ‘palliative-care kit’ (Annexure 4) containing necessary
drugs and consumables.
 Home-care should also be provided to those patients seeking exclusive AYUSH
treatment. The CHO and ASHA Facilitator shall be trained in basic physiotherapy to
educate patients and caregivers.
 The services of the Yoga trainer shall be co-opted in ensuring holistic care of the
patient.
 The services of the ICTC counsellor at the PHC-HWC wherever available shall be
made available at regular intervals for supportive supervision of the palliative care
team at the Sub Centre – HWC and counselling of the patient and his/her family
 Medicines: For management of symptoms/associated conditions.
 Food/Diet. to meet visitors during the specified visiting hours.
 Recreation facilities: newspapers, television (if available), indoor games.
 The in-patient treatment period should be used to formulate the plans for home –
based palliative care and the same must be discussed with the patient and care –
givers.
 All admitted patients should be provided with a discharge summary with detailed plan
for further care and follow-up from the OPD

Health Promotion including the use of IEC for Behaviour Change Communication: •

 Collaborate with NGOs to act as technical advisory agencies for the process of
community awareness, mobilisation and empowerment in the field of palliative care
programs.
 Empower the palliative trained staff to orient and educate care-givers/family members
in providing home-based care.
  Empower Community Based Organizations and families in continued care for the
patient through structured care & support educational activities.
 Ensure involvement of the Local Self Government Institutions/PRIs through
sensitisation workshops for the members.
 Sensitize healthcare professionals in private and public-private health facilities.

 Professional organisations like Indian Association of Palliative care and NGOs could be
co-opted for this.
 Ensure active support from the media.
 Conduct awareness/sensitization programs for regulatory and administrative nodal 11
officers.

What is primary care and why should palliative care be integrated into it?

According to the WHO Constitution: “Health is a state of complete physical, mental

and social well-being and not merely the absence of disease or infirmity. The enjoyment of
the highest attainable standard of health is one of the fundamental rights of every human
being”. Further, “health is a fundamental human right indispensable for the exercise of other
human rights”. Around the world, especially in LMICs, most people with any of the myriad
types of suffering associated with serious or life-threatening health problems lack access to
palliative care. It is estimated that 40 million terminally ill people, and millions of others not
imminently dying, need palliative care every year. But 86% of those in need do not receive it,
including 98% of children in need in LMICs.
Access is least likely in the community where most of the patients are and wish to
remain. Thus, millions of vulnerable people are being denied their right to the highest
attainable standard of well-being. Most suffering due to serious or life-threatening health
problems can be relieved with inexpensive, safe and effective medicines and equipment
prescribed by any physician, clinical officer or assistant doctor with basic palliative care
training. Typically, the only care available in the community is PHC. Given these facts, it is
both medically and morally imperative that palliative care be integrated into PHC.
According to the Declaration of Alma-Ata from 1978, PHC (Annex 1):
 is essential health care based on practical, scientifically sound and socially acceptable
methods and technology;
 should be universally accessible to individuals and families in the community;
  should be affordable for the community and country at every stage of their
development;
 is the central function and main focus of the country’s health system;
 is essential for the overall social and economic development of the community; and
 is the first level of contact with the national health system and brings health care as
close as possible to where people live and work.
In keeping with the Declaration of Alma-Ata, PHC also:
 should address the main health problems in the community;
 should provide health-promotive, preventive, curative, rehabilitative and palliative
services across the life-course; n should include:
 education on prevailing health problems and on preventing and controlling them;
 promotion of good nutrition, safe water and basic sanitation;
 maternal and child health care, including family planning;
 immunization against the major infectious diseases;

Access to palliative care:

Access to palliative care is a critical aspect of healthcare, aiming to improve the

quality of life for patients and their families facing life-threatening illnesses