Recommendations to Support Nurses and Improve the Delivery of Oncology and Palliative Care in India

Challenge

Two primary safety concerns for nurses emerged from the data: (1) occupational hazards related to lack of supplies and chemotherapy administration and (2) perceived risk of personal workplace violence/harassment.

Lack of supplies and chemotherapy administration

Many nurses were distressed by the lack of supplies, such as thermometers, bedpans, and wheelchairs. Lack of basic resources (such as running water or soap) compromised the safety of nurses and patients and made it extremely difficult to implement fundamental elements of nursing practice, such as good hand hygiene, which has been demonstrated to be the most important front-line strategy in reducing the spread of infection in hospitals.[28]

Another critical safety issue, voiced by almost every nurse, involved the mixing and administration of chemotherapy, which occurred without access to a ventilation hood or appropriate personal protective equipment. Most nurses feared for their physical health related to exposure to chemotherapy (and to a lesser extent, radiation) and verbalized some understanding of the risks. Many expressed specific concerns about how exposure could affect their menstrual cycles, fertility, and ability to carry a child. These concerns are legitimate and well documented in current guidelines.[29303132]

Opportunities

Providing appropriate incentives and accountability for nurses to engage in regular, between-patient hand sanitization (such as with hand sanitizer gel if sinks/water are not easily accessible) is important to prevent infection among vulnerable cancer patients whose immune systems are weakened by the effects of chemotherapy, radiation, and surgery. Supplies that directly relate to patient and nurse safety (for example, gloves, soap, “sharps” containers to dispose of used needles) are essential and increased accountability related to their use is recommended. Hospital administrations and senior personnel can work to ensure that these resources are available and utilized by nurses, other healthcare providers, and family attendants (family members). For example, at a pediatric public hospital in Nepal, V.L. observed that the primary family attendant was provided with a bottle of hand sanitizer that was kept at the patient's bedside; the family attendant was tasked with offering hand sanitizer to every care provider that approached the patient.

Safety issues related to chemotherapy are important for all staff who handle and administer chemotherapy, but they are particularly essential for nurses directly involved in the reconstitution and mixing of chemotherapy agents, and who are at high risk for repeated exposure through inhalation, dermal absorption, or ingestion.[30] Some have called for LMIC hospitals to prioritize hiring dedicated pharmacists or pharmacy technicians to assume the task of mixing chemotherapy, thereby removing this activity from the work of nurses.[10] While this could be an important strategy, it is often complicated by a lack of trained pharmacists and available safety equipment[89] and perceived role expectations of the nurse. In the meantime, one idea is to mandate pharmaceutical companies who distribute chemotherapy agents to institutions such as SICH to include adequate amounts of personal protective equipment (gloves, aprons, masks, eye protection) for nurses along with their shipments and require senior and head nurses to ensure they are properly used.

It is important to note that larger system issues related to safe disposal of bio-hazardous waste are a crucial environmental and safety issue that needs to be addressed by the local and state government. However, most urgently, hospital staff, patients, and family attendants must be protected from unnecessary exposure to cytotoxic agents and needle-sticks while in the hospital, and effective strategies can be simple and cost-effective. For example, chemotherapy mixing tables in the wards could be moved further away from patients and family members and closer to windows and fans for improved ventilation; basic wooden ventilation hoods could be constructed to make chemotherapy mixing safer for nurses, and family members discouraged from handling chemotherapy. Nurses could be provided with inexpensive, reusable, plastic point-of-use trays, so they are able to keep sharps more safely contained as they move bed-to-bed, patient-to-patient (this last strategy was piloted on the pediatric wards by Z.L. during a trip to SICH with significant success).

Providing basic chemotherapy safety training for nurses (and any other caregivers involved in handling chemotherapy) could be done cost-effectively by exploring local or regional chemotherapy training programs that already exist, partnering with nongovernmental organizations or other nonprofit training institutions, or through an international “twinning program” with oncology certified and specialist nurses who are informed and sensitive to the realities of practice in LMICs.[33] Particular attention should be given to chemotherapy dose calculations and prevention of chemotherapy extravasations and needle-sticks. Education about safe needle practices and tools to help nurses administer medications and insert intravenous lines with less risk of getting accidently punctured (”stuck”) by used needles is needed. Nurses (as well as auxiliary staff and family attendants who are likely to be monitoring chemotherapy infusions on an overcrowded ward) must be taught to promptly recognize the signs and symptoms of extravasation and how to properly intervene to prevent potentially devastating complications.

Perceived risk of personal workplace violence

Nurses expressed fear that family attendants would verbally or physically attack them if a patient's clinical status deteriorated or a patient died unexpectedly during their shift. Female nurses seemed especially concerned about their personal safety during evening or night shift when staffing and security were minimal. Other female nurse participants did not express explicit concerns for their personal safety, but a more general discomfort in attending to the personal care needs of male patients.

Opportunities

Nurses’ fear of personal violence in the hospital is not unique to India and has deep and complex roots, including disconnection between nurses and family attendants, lack of information or misunderstandings by family attendants regarding patient prognosis, frustrations related to overcrowding and understaffing, and societal perceptions and stereotypes regarding gender, status/class, and the profession of nursing.[161734] Strategies to address this concern are equally complex, but a first step could include acknowledging the nurses’ fears in a formal meeting with hospital leadership and increasing meaningful security presence at night within hospital wards. Promoting opportunities for positive interactions between nurses and family attendants, as well as training physicians and nurses to effectively discuss prognosis and break bad news to family members, represent longer term and upstream strategies to help address concerns of personal violence. Hiring a diverse nursing workforce, to include more male nurses, is also a potential strategy.

Challenge

Almost all nurses discussed stress related to nurse-to-patient staffing ratios. Many felt that increasing the number of nurses was a crucial factor to improve patient care, particularly on evening and night shifts. Ratios on the general wards of one nurse to sometimes over fifty patients are extremely challenging/impossible, and by default, reduce the nurse to a medication technician and clerical scribe. “No time” was the primary reason given by nurses to explain compromised patient care. Most nurses expressed that they found the amount of required documentation tedious and the major barrier to having time to provide direct care to patients.

Opportunities

Increasing the number of nurses is recommended in combination with reexamining the roles and responsibilities of the nurse. In other words, hiring more nurses to allow for better nurse-to-patient ratios is an important step, but it is not enough by itself. Hiring additional nurses will be more successful if it is accompanied by concurrent efforts to encourage and incentivize nurses to practice to the full extent of their training and capacity. Supporting nurses to realize their full scope of practice will require commitment by hospital leadership and buy-in from senior nursing staff.

One way to give nurses in the current system more time to care for patients is to reexamine the type and amount of documentation required and who is responsible for it. Much of the currently required documentation is redundant and has a debatable role in improving patient care. One senior nurse suggested that the burden of clerical work could be largely delegated to nonnursing personnel. Reducing clerical work may alter the “identity” of general ward nurses, and a period of intensive role modeling may be necessary to help nurses focus on patient-centered aspects of their job that can occupy time previously dedicated to documentation.

It is unlikely that the large patient-to-nurse ratios in LMIC public sector hospitals will improve in the near future; in fact, they will likely worsen as the global burden of cancer and other noncommunicable diseases explodes. Therefore, it is critical that pragmatic, scalable, and novel care delivery models are implemented and evaluated. For example SICH in a family attendant is required to remain in the hospital for the patient to receive care. Family attendants, along with ayahs (housekeepers) and ward boys (orderlies), informally perform and assist with many crucial nursing-oriented tasks, such as medical administration, dressing changes, toileting, and mobilizing patients. New models of care delivery that formally train, support, and leverage the activities of the family attendant and auxiliary staff[353637] can provide cost-effective approaches to improve patient care in hospitals such as SICH; more resources and funding should be directed towards implementing and evaluating such models.

Challenge

Nurses in this study, particularly those on the general wards (versus specialty departments, such as pediatrics or palliative care), reported limited opportunities and incentives to develop their professional expertise.

Opportunities

Many nurses expressed eagerness to enhance their professional skillset; such individuals could be organized into an informal “professional development team” to help improve care delivered at the bedside. Examples of specific strategies to enhance accountability, continuity of care, and foster the development of professional nursing identity include: assigning nurses permanently to a specific ward to create stable staffing patterns (versus requiring nurses to shift/rotate wards every few months); assigning/admitting patients to the wards by specialty/type of cancer to help nurses develop proficiency and expertise in caring for a specific cancer population, such as medical oncology patients; and give nurses individual patient assignments, when possible, to increase nurse accountability and the connection between the nurse and patient/family attendant.

Nurses who demonstrate an eagerness to enhance their skill set and leadership potential should be identified by hospital administrators, given more decision-making authority, and provided with opportunities and financial support for professional development, expecting that they will formally share this knowledge with colleagues.

Challenge

Participants expressed concerns regarding strained interactions between different groups of interdisciplinary care providers, limited decision-making opportunities for nurses, and an emphasis of seniority over competence.

Opportunities

Certain departments within SICH have the benefit of particularly strong physician leadership and advocacy; this results in greater support and additional professional development opportunities offered to nurses working in these departments. Importantly, these physicians provide excellent role modeling for nurses related to communication with patients and family attendants and a commitment toward solving difficult patient care problems. Identified physician champions for nurses should be formally recognized and supported by hospital leadership.

There is great potential for senior and head nurses to assume increased responsibilities in the development of junior staff through role modeling and promotion of professional standards. Similar to staff nurses who could be permanently assigned to one ward, head nurses could also be permanently assigned to one ward (versus shifting/rotating from ward to ward). This may foster an increased sense of accountability and continuity in the supervisory management and professional development of junior nursing staff.

One participant (who had significant nursing experience in the private sector and also abroad) suggested that regular staff meetings and educational activities for nurses are important and should be organized for nurses at SICH; this is a role that head nurses could potentially assume, with appropriate mentorship. This participant also suggested that a “teaching nurse” should be available on the wards to support nurses. This suggestion seems consistent with the employment of a clinical nurse specialist (CNS) or nurse educator (terms used in the United States or Canada) – a nurse with advanced training who can help teach and guide other nurses in best practices and quality improvement efforts.[38] One strategy for government hospitals in India could be to prioritize employment of two Master's prepared nurses (either from within India or from another country or similar setting) to help supervise clinical practice, write protocols and standards of care, and role model patient-centered care. Clearly, this represents a financial investment for the hospital, but there are cost-effective and creative ways to explore this possibility. For example, it may be possible to partner with a College or School of Nursing, either from within India or internationally, who offers academic credit to graduate nurses for this type of practicum global health work. Additional “twinning” partnerships could be sought within professional organizations that have a commitment to global oncology nursing, such as the International Society for Nurses in Cancer Care.[39] Long-term immersion in the field by a nursing mentor, or team of nursing mentors, sensitive to the on-the-ground realities and cultural context of the specific LMIC setting, could be a helpful strategy to role model caring and advocacy behaviors.[4041]

Challenge

Nurses are on the frontlines of managing cancer treatment and symptoms, but most of them do not receive formal training related to oncology care.

Opportunities

There are many educational topics relevant for cancer nurses in India, especially related to palliative care and chemotherapy. Standardized, general content regarding cancer biology, treatment modalities, symptom management, and palliative care should be integrated into preclinical level (e.g., General Nurse and Midwifery (GNM), and BSc) nursing curricula.[42] A more specialized, standardized chemotherapy certification course (that focuses on safe chemotherapy mixing and administration, managing treatment side effects, and oncologic emergencies) should be required for all government and private sector oncology nurses who administer chemotherapy. Curricula models exist that cover general oncology topics, as well as specific palliative care and chemotherapy content;[43444546] however, most are based on high-income country resources. It is critical that any oncology nurse curriculum or chemotherapy certification course developed for India (or any LMIC) is culturally and contextually relevant, developed and ultimately taught by in-country leaders to ensure sustainability, and involves hands-on, mentored practice at the bedside.[10162147]

One excellent example of a relevant in-country training course is the month long palliative care course offered at SICH, which has been completed by all of the palliative care department nurses and a limited number of the general ward nurses. A modified and abbreviated version of this course, which emphasizes pain assessment and management, care of the actively dying patient, and communication, is recommended for all cancer nurses in India. General ward nurses should be taught basic principles regarding the safe and beneficial use of morphine even if they are not administering the medication themselves. Obviously, this requirement could strain existing resources (in terms of time needed to teach the class and nurses being away from their wards), and support would need to be granted at the institutional level. Exploring telehealth and e-learning delivery models may be an option depending on the institution's technology and internet capabilities. However, meeting this goal could also promote nursing development as the classes could be taught by nurses who have already completed the training and who can role model to others effective ways to communicate and manage symptoms. A train-the-trainer approach that capitalizes on local expertise and cultural knowledge is essential. Such an approach has the potential to empower nurses and improve patient care by focusing on the types of scenarios nurses typically encounter at hospitals such as SICH. For example, most Western nurses (except specially trained wound and ostomy nurses) have limited knowledge about how to manage the complicated wounds often seen in LMICs; SICH palliative care nurses are already experts in this area and have much knowledge to share with nursing colleagues. Another potential benefit of a train-the-trainer model is that it may foster greater cooperation and collegiality between distinct groups of nurses within an institution (for example, between contract nurses and government appointed nurses). At SICH, many lay-providers, such as volunteers and family attendants, and ayahs and ward boys care for patients; these individuals could also be involved in nurse-led educational programs to learn about symptom management and caring for cancer patients; such a program may be a positive step to further improve interactions between family attendants, ayahs/ward boys, and nurses.

A number of nurse participants also discussed their interest in educating members of the community about cancer screening and prevention. This is an area ripe for nurse leadership as it is a project well aligned with the professional goals of nursing and has the potential to make a significant and positive impact on the local community. Nurses who have an interest in this type of community outreach should be identified, and a nursing leader, ideally within the home institution, could be assigned to coordinate and facilitate this professional activity.

Challenge

Many nurses talked about the importance of “teamwork” and believed that more could be accomplished by working together. However, a strong sense of hierarchy and segregation among physicians, nurses, class IV employees (ward boys and ayahs), and patients and family attendants within the hospital (observed during fieldwork) may create barriers to cooperation as equal team members. Nurses, especially on the general wards, expressed distress related to professional isolation and lack of supportive services. The absence of counseling services to help patients and family attendants cope with the tremendous psychosocial and financial impact of cancer was mentioned by a number of nurses (and other healthcare providers), who felt like this was an important element of the “team” missing on the general wards.

Opportunities

While it would be naïve to ignore the reality of longstanding power dynamics, certain measures can be taken to enhance a sense of teamwork. For example, working together to offer interdisciplinary education (see Recommendation #5) may be one way. Nursing leaders could role model collegial, interdisciplinary collaboration between different groups of nurses within the hospital and with physicians and ward boys and ayahs. Physician champions within a hospital can engage nurses collaboratively on patient rounds and role model effective interdisciplinary and patient-provider communication.

It may be an extremely beneficial investment for hospitals to enhance social work and counselor support to improve patient care and reduce the risk of nurse burn-out.

Challenge

Opioids, such as morphine, are critical to manage cancer pain, but access to these medications is often problematic in LMICs.[4849505152] Progress has been made to improve opioid availability within India, but many patients with cancer still suffer in avoidable pain.[535455] For example, the palliative care department at SICH has made significant effort to procure morphine and make the medication available to patients, especially those seen in the palliative care department. However, most nurses on the general wards reported (and were observed to have) a very limited role in pain assessment and management and rely on family attendants and the palliative care department to assess and manage pain.[22] This unfortunately results in many patients suffering in pain even when morphine is available in the hospital. Many patients and family members live in rural areas and must travel hundreds of kilometers to reach hospitals such as SICH and obtain morphine.

Opportunities

The first critical step is for hospitals to take action to procure morphine and to ensure, at a minimum, that oral, immediate-release (short-acting) morphine is available at all times in the hospital pharmacy. Institutions that have been successful in procuring morphine (such as SICH) could serve as role models and mentors to other institutions who wish to improve access to pain relief for their patients. Resources exist through international organizations, such as the Pain and Policy Studies Group,[56] as well as regional institutions, such as the Indian Association of Palliative Care[57] and Pallium India,[58] to support improving access to opioids.

Concurrent with ensuring availability of morphine, institutions could require all oncology nurses to complete a basic palliative care course (See Recommendation #5) to improve their ability to appropriately and safely assess and manage pain. Another approach may be to train a motivated group of ward nurses and formally designate and recognize these individuals as “palliative care champions” or “pain resource nurses.” These nurses could then serve as resources and mentors to other nurses on the wards. Similar approaches have been used in higher-resource settings[59] and may be useful in hospitals in India, with appropriate adaptations to account for available resources and cultural differences.

In addition, clinical practice should facilitate nurse accountability for assessing and managing pain. On the general wards, this would likely involve education of the nurses and also a reevaluation of staffing patterns and nursing role expectations (see Recommendation #2). A serious commitment on the part of hospital leadership will be essential for success. On wards where nurse-to-patient ratios are more manageable (such as ICUs, for example), implementing this recommendation could involve education about considering pain as “the 5^th vital sign,”[60] improving accurate documentation of patient's pain, and reinforcing the importance of reassessing the effectiveness of pain medication therapy. This type of quality improvement project could be undertaken by a graduate nursing student or nurse educator/CNS (see Recommendation #4).

More than 70% of the Indian population lives in villages,[61] and these individuals are at particular risk of dying in pain. Serious consideration should be given to creating specially trained teams of hospital-based nurses to improve distribution of morphine among rural patients in India as has been done in countries like Uganda.[62] A project such as this is obviously a large undertaking on multiple levels. Government officials and hospital directors could look to successful African models and pilot a program in regions with an existing palliative care network, and a strong history of advocacy and policy work related to opioid availability, such as Kerala or Telangana/Andhra Pradesh.[636465]

Challenge

More research is needed to move beyond “transplanting” or “adapting” Western-developed interventions to LMICs and to instead develop a robust evidence base from within LMICs that is culturally, contextually, historically, and linguistically relevant to nurses practicing in these settings.

Opportunities

Future projects should consider a community-based participatory research approach, which actively engages nurses to set priorities and collaboratively develop and pilot solutions. Successful examples of this approach exist in LMICs.[186667] Nurse researchers from higher resource countries involved in twinning programs or related partnerships can work collaboratively and longitudinally with cancer nurses in India to identify priorities and implement realistic interventions and solutions and strive for full ownership of the project to ultimately rest with local in-country collaborators.[68]