INTRODUCTION:

An attempt to conquer and eradicate disease is probably a myth. When prevention of disease or curative measures fails, people respond to the “hopeless” situation in their personal way, through either rejection or denial. Usually the chronically or terminally ill patients are neglected as people feel it is waste to spend money, energy and time on their care. More often the ultimate rejection is the denial that such people need the skills and expertise of modern health care. These patients are left to the care of their families, without appropriate professional support. The patient experiences depression as their needs are not met. The care takers find it increasingly difficult to care of the terminally ill person and reacts by seeking avenues for custodial care. The patient may experience being unloved, unwanted and burdensome. In this atmosphere, family members may wish patient to die as early as possible. Few family members may experience guilt. This may also be due to increasing nuclear families and urban life¹.

With this background, dying becomes a process to be ignored although dying and death is a significant event in the family. The health professionals have discussed their role on dying and death. The nurse has traditionally been the health professional most crucial to patients and families confronted with imminent death. The focus of nursing care is to comfort and reassurance for families and use of skills to maintain body integrity and functioning of the patient with respect.

The hospice is a concept derived from ancient times. Its contemporary meaning means a programme of care offered to people completing their journey through life – a way station for the terminally ill. Hospice care is generally, considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits. The philosophy of the hospice is provision of palliative and supportive care to dying patients and to their families, with emphasis on symptom control and preparation for and support during and after death. The main aim is to improve the quality of remaining life. In many, occasions, supportive care is provided in the home, allowing patients to die in familiar surroundings they are attached. However, if this is not possible or feasible, the dying person is cared for on an inpatient basis involving the family in caring them².

Although, England is the best known country providing hospice care, the USA has begun to accept and apply the concept of the hospice primarily to those dying from cancer. In India, where nuclear families are on the increase, the necessities of such centers are important and are on the rise. In hospice care, bright and cheerful environment are created through provision of comfort and compassionate understanding².

HISTORICAL PERSPECTIVES:

In western countries

The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The word "hospice" is derived from the Latin word ‘hospes’, which means to serve double duty in referring both to guests and hosts. Historians believe that the first hospice was originated in the 11th century, around 1065. The name was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice “St. Christopher’s Hospice” in a residential suburb of London³.

Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University. Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care. This lecture launched the following chain of events, which resulted in the development of hospice care as we know it today³.

Unlike hospice care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative is derived from a Latin word ‘palliare which means ‘to cloak’. It is an area of healthcare that focuses on relieving and preventing the suffering of patients. Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual and social concerns that arise with advanced illness³.

The World Health Organization has defined palliative care “as approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, though the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, physiological and spiritual⁴.

Palliative care began in the hospice movement and is now widely used outside of traditional hospice care. The first United States hospital-based palliative care programs began in the late 1980s at a handful of institutions such as the Cleveland Clinic and Medical College of Wisconsin and likewise it started globally⁴.

In India

The concept of hospice and palliative care is relatively new to India, having been introduced only in the mid-1980s and it is still in infancy stage. Since then, hospice and palliative care services have developed through the efforts of committed individuals, including Indian health professionals as well as volunteers, in collaboration with international organizations and individuals from other countries. In 1975, the Government of India initiated a National Cancer Control Program. By 1984, this plan was modified to make pain relief one of the basic services to be delivered at the primary health care level. Unfortunately, this policy was not translated into extensive service provision. The hospice and palliative care movement in India started tentatively in the mid-1980s and has slowly increased over the last two decades⁵.

In India, the earliest facilities to deliver palliative care within cancer centers were established in some places like Ahmadabad, Bangalore, Mumbai, Trivandrum, and Delhi in the late 1980s and the early 1990s. Palliative Care was initiated in Gujarat in 1980s with the opening of a pain clinic and palliative care service under the department of Anesthesiology at Gujarat Cancer and Research Institute (GC and RI) a Regional Cancer Centre in Western India. One of the important steps in the history of palliative care development in India was also began from here; forming of Indian Association of Palliative Care (IAPC). In 1986, Professor D’Souza opened the first hospice, Shanti Avedna Ashram, in Mumbai, Maharashtra, and Central India. At a similar time, pain clinics were established at the Regional Cancer Centre, Trivandrum, Kerala, with the assistance of a WHO subsidy, and at Kidwai Memorial Institute of Oncology, Bangalore, Karnataka. From the 1990s onwards, there was a significant increase in the momentum of development of hospice and palliative care provision. This was demonstrated through both an expansion in the number of services as well as other key events and initiatives. ‘CanSupport’ foundation was founded in 1997 in Delhi which provided the first free palliative care home care support service in North India. In Pune, Maharashtra, central India, the Cipla Cancer Palliative Care Centre was established⁶.

GPPCS now has established link centers in three towns in Assam (Rangia, Digboi, and Hojai). Karunashraya Bangalore Hospice Trust is a 55-bedded hospice with a homecare service and hospital facilities nearby. Bangalore Hospice Trust's unique strength lies in the fact that it provides an entire circle of care to the patient. The Chandigarh Palliative Care service was started with the aim of integrating palliative care into comprehensive cancer care and providing continuity in care to the cancer patients. It is a joint project of Department of Radiotherapy, Postgraduate Institute of Medical Education and Research and Chandigarh branch of Indian Red Cross Society (NGO). Similarly, Kidwai Memorial Institute of Oncology in Bangalore has been providing palliative care services for more than a decade⁶.

McDermott et. al. identified 138 organizations currently providing hospice and palliative care services in 16 states or union territories. These services are usually concentrated in large cities and regional cancer centers, with the exception of Kerala, where services are more widespread. The Kerala network has more than 60 units covering a population of greater than 12 million and is one of the largest networks in the world. In April 2008, Kerala became the first state in India to announce a palliative care policy. The Guwahati Pain and Palliative Care Society (GPPCS) in Assam, North East India, is a good example of the ways in which palliative care services have developed in different states and provinces⁷.

Palliative care in India is still at an early stage of development and faces numerous problems. The WHO step ladder pattern has been a landmark, a watershed, a milestone in the pain management timeline. The availability, accessibility, and effectiveness of modern methods of pain control make it a moral mandate for every physician to be knowledgeable in the use of analgesics. It is estimated that less than 3% of India's cancer patients have access to adequate pain relief. Collaborations between the government of India, Indian Association of Palliative care and WHO, provide further optimism regarding future development. India has the potential to lead the way and enlighten others rather than being subservient to those countries that enjoy resource wealth⁷.

Hospice and Palliative Care for the Terminally Ill

Hospice care and palliative care are very similar when it comes to the most important issue for the dying people. Many have heard of hospice care and have a general idea of what services hospice provides. Few of them, believe hospice also provides “palliative care,” As an adjunct or supplement to some of the more “traditional” care options, both hospice and palliative care protocols call for patients to receive a combined approach where medications, day-to-day care, equipment, bereavement counseling, and symptom treatment are administered through a single program. Where, palliative care programs and hospice care programs differ greatly in the care location, timing, payment, and eligibility for services⁷.

Palliative care teams are made up of doctors, nurses, and other professional medical caregivers, often at the facility where a patient will first receive treatment. These individuals will administer or oversee most of the ongoing comfort-care patients receive. While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team. Palliative care can be received by patients at any time, at any stage of illness whether it is terminal or not⁷.

Palliative care can begin at any time after the diagnosis of cancer is made, regardless of the patient's age, stage of cancer, and treatment plans. Palliative care is not necessarily end-of-life care. End-of-life care is a type of palliative care. If the patient's cancer cannot be treated, then the palliative care focus shifts to end-of-life care, which is often provided by hospice.Palliative care improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support till the end of life of the patient and bereaved family⁷.

Palliative care

· Provides relief from pain and other distressing symptoms;

· Affirms life and regards dying as a normal process;

· Intends neither to hasten or postpone death;

· Integrates the psychological and spiritual aspects of patient care;

· Offers a support system to help patients live as actively as possible until death;

· Offers a support system to help the family cope during the patients illness and in their own bereavement;

· Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;

· Will enhance quality of life, and may also positively influence the course of illness;

· 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 complications⁷.

Symptom Control

The objectives of hospice care anticipate events that occur to patients and families affected with life crisis of terminal illness such as

· Offering emotional support to patient and family.

· Reinforcement of the belief that patients and families experiencing the progression of a disease beyond cure need and are entitled to, expert medical nursing care.

· Facilitating professional expertise for specific problems areas in the events physical, psychological, interpersonal, spiritual and financial aspects.

In cancer, the major symptom to be controlled is pain. Over 80% of all terminally ill cancer patients experience pain. This may be related to the disease process or may be related psychologically in manifestation of anxiety, depression or anger underlying the realization that death is imminent. In this sense pain is anguish. Often pain is a combination of both dimensions, each exacerbating the other. Pain is undesirable and unnecessary experience. Controlling pain is possible. The regular prescribed administration of oral analgesics or narcotics can obviate pain⁷.

Concern that the patient will become addicted to drugs fades into meaningless rhetoric when pain control is the issue with terminally ill hospice patients. Fears of psychological dependence are unwarranted. In a retrospective study over 500 hospice patients at St. Christopher’s, the data show that in many instances the dosage of narcotics does not significantly increase overtime. Once pain is controlled, the patients can be stabilized on reasonable doses and in some cases dosages can be reduced⁷.

The Role of Nurse

Hospice programs provide through many disciplines – medicine, nursing, social work, religion, psychiatry and related. The case of all hospice programs is nursing care. Historically and scientifically nursing is the profession that has as its essence holistic, compassionate concern for the individual. Nursing’s social welfare commitment affords its practioner’s the knowledge base to provide effective care in all situations, from health maintenance to supportive care for the dying. Nurses should provide comprehensive care in physical, psychosocial and spiritual dimensions of life⁸.

While the patient is being cared for in the home, the nurse is a teacher, educating family members how to minister the physical care necessary to promote comfort. The nurse guides the family as they learn how to position, feed, ambulate and attend to the function of elimination. These activities brings the patient and care givers together in mutually sharing and caring activities while reducing the feeling of helplessness that the family often feels during this phase of illness. Communication skills are paramount, in effective delivery of palliative care. The emphasis in much of the previous literature has been on physician communication and also has been largely focused on the singular topic of breaking bad news⁸.

The nurses need to listen patiently to each person’s concerns and support his or her efforts at talking about the eventuality of death and what it means to the patient and the relatives who survive. Spiritual need may be attended appropriately. The framework of these needs are the individual’s perceptions of factors necessary to reconcile his religious beliefs to his illness or impending death and to derive reassurance and comfort from these beliefs and to conduct his last days in congruence with them. Malloy et.al. in 2010 conducted a survey among 333nurses attending an End of Life Nursing Education Consortium conference. The survey assessed nurse’s perspective of the most challenging aspects of communication in their work and elicited examples of both positive and negative communication. Respondents identified several key areas in need of improvement related to communication. Examples of the most difficult areas in needs of communication include discussing bad news, talking with physicians about palliative care issues, discussing spiritual concerns, and talking with patients/families from different cultures. The main aim of hospice nursing care is to provide the patient and family with a secure feeling and minimize fear of abandonment as death approaches so that all involved become more hopeful for a comfortable and peaceful death. Hospice nursing care planned and administered appropriately reaffirms the value of life⁸.

The nursing role in palliative care of patients are to relieve physical symptoms, achieve quality of life, maintain an independent life, to provide relief for mental anguish and social isolation, to provide family support, reduce isolation, fear and anxiety and provide good death or dying well. Nurses are the primary, constant health care providers across clinical settings, and effective skills in communication are critical to nursing practice and to ensure quality care. Education regarding communication skills is needed in basic and graduate nursing education programs as well as in continuing education for practicing nurses⁸.

CONCLUSION:

There is a need to help people with life-limiting diseases, such as cancer, for palliative and hospice. It is noted that patients have increased suffering and a delay in receiving appropriate care. Nurses play a significant role in palliative and hospice care. In addition to the conventional nursing duties, they provide emotional support to the terminally ill patients and their families. Many issues, such as prognostic uncertainty and concerns about when to initiate End of Life (EOL) discussions, serve as barriers in giving care to patients. Identifying the issues that hamper the process in individual patients and families is important for rectifying the situation. The algorithm presented in this article may serve as a resource for nursing strategies to help patients with cancer prepare for hospice.

REFERENCES:

1. Mary Ann Cleauy. The nurse and the eddying patient: special report in medical and health annual, 1997 encyclopedia Britannica, Chicago, p.197-198.

2. Standards for Hospice and Palliative Care Provision, 1994 Australian Association for Hospice and Palliative Care, Melbourne.

3. Kasap D. Report to the Palliative Care Program Review Stage- 2, Public Affairs, Parliamentary and Access ranch, 1996 Commonwealth Department of Health and Family Services publication No. 1833 Canberra.

4. WHO. Definition of Palliative Care. 2012 World Health Organization. Retrieved March 16.

5. Walsh D, Gombeski W, Goldstein P, Hayes D, Armour M. Managing a palliative oncology program: the role of a business plan 1994. Journal of Pain Symptom (2): p.109–18.

6. Divya Khosla, Firuza D Patel, and Suresh C Sharma. Palliative care in India: Current progress and future Needs. Indian Journal of palliative care 2012 Sept-Dec; 18(3): p. 149-154.

7. McDermott E, Selman L, Wright M, Clark D. Hospice and palliative care development in India: A multi-method review of services and experiences 2008. Journal of Pain Symptom Manage. ; 35:583–93.

8. Malloy, Pam, Virani, Rose, Kelly, Kathe, Munévar, Carla. Beyond Bad News: Communication Skills of Nurses in Palliative Care. 2010. Journal of Hospice and Palliative Nursing: May/June - Volume 12 - Issue 3; 166-174.

Received on 22.02.2014 Modified on 08.03.2014

Int. J. Adv. Nur. Management 2(1):Jan. - Mar., 2014; Page 48-51