Barriers and facilitators to the implementation of palliative care services at five tertiary hospitals in Nigeria: a qualitative formative study | BMC Health Services Research

In total, five PC providers participated in in-depth interviews, including two physicians and three nurses, and 29 patients and 29 caregivers participated in ten focus group discussions. The demographic characteristics of the participants are displayed in Table 1.

Table 2 summarizes the barriers and facilitators to implementing palliative care services, categorized into the five CFIR domains: innovation characteristics, inner setting, outer setting, characteristics of individuals, and implementation process. Additional quotes are provided in Additional file 3.

Innovation

Perceived benefits of PC

PC was perceived to have a significant impact on patients’ and caregivers’ psychological and physical health. Patients described how their physical health had considerably improved, especially helping with pain relief and symptom control.

“The first time we got here, I was on admission then, I couldn’t sleep. Then I knew them [palliative care] and they really helped me because the pain was very severe then. So, when they came to check up on me, they gave me another victory, a different medicine from the one I was using before, it went well with my body, and the pain left. I can say the pain was rated as 9 as of then and they introduced me [to palliative care], it dropped to 5.” (Patient, Site A).

Several patients strongly expressed that they experienced psychological improvement as a result of the care and support received from the team, describing feeling encouraged, hopeful, and better equipped to cope with and manage their condition.

“When I was now on admission during my surgery I met with this department [palliative]. She came with some other staff too… They have been talking to me, encouraging me. Maybe we are down or restless, and somebody encourages you and you have hope again, your hope comes alive again, and you have gotten support.” (Patient, Site D).

Similarly, a salient aspect of PC expressed by many patients and caregivers was a deep sense of spirituality and how the spiritual counseling aspect of PC services was also a source of courage, strength, comfort, and normalcy.

“Palliative care is by divine, by divine…I am very happy for their prayer. The prayer they prayed for me that day built up my faith. And that’s how I summoned courage.” (Patient, Site D).

While patients’ and caregivers’ accounts mostly focused on the highly valued psychological support and pain management received, they also noted the significance of the care team going above and beyond to cater to their financial needs, including medical expenses and nutritional support.

“They will ask my sister, “Have you eaten?” If you don’t have money and there is nobody you can call for any assistance, they are ready to give us the assistance.” (Caregiver, Site C).

Patients noted that they benefited from follow-up care, as well as reminders for medications and subsequent medical visits, provided by the palliative care unit following their discharge. While discussing the difficulties of providing home-based care services for all their patients due to logistical issues, a few PC providers highlighted the benefits of offering some form of bereavement follow-up services to the affected families.

“We do visitations, we do home care also and we do bereavement care after the patient has passed. You know we have been going there to see the patient, now that the patient is no more, we want to see how the family is coping, if there’s anything they need, any solution, especially those that like especially have issues (Nurse, Site A).

Inner setting

Informal funding arrangements

Many patients admitted to the PC unit faced significant financial constraints, which often limited their ability to consistently access PC services and afford essential medications. In recognition of this, the PC units depended heavily on charitable funding and donations. PC providers frequently contributed their own funds to help cover the medical expenses of patients in need, largely driven by a shared commitment to improving patient quality of life and a strong sense of community within the unit.

“If they can’t afford it, we’ll have mercy, we’ll have mercy because most of those patients, they’ve spent a lot, they’re drained already.” (Nurse, Site A).

“We contribute. All of us contribute money to assist them. We contribute money. Sometimes I open the WhatsApp group, asking for donations. Very tiny, just getting tiny donations.” (Physician, Site D).

In addition, one facility implemented a sliding scale payment model, allowing patients to be billed based on their financial capacity.

“When you are seeing us personally, our main aim is not finance, because most of the time the patient may come in distress and in pain. So, if the patient has money, we bill the patient for about 3,000 Naira. Then subsequent visits 1,000 Naira based on their financial state. If the patient does not have money, the patient can pay the money another time.” (Physician, Site B).

Resources and funding support

Resource deficiencies were frequently highlighted by PC providers as a significant barrier to the provision of PC. Several providers also reported a lack of funding support from management, as the PC unit was perceived as generating little economic benefit for the hospital system. This perception in turn contributed to the limited financial resources allocated to the unit, further impacting their ability to provide PC services.

“Because it is like the last stage of medicine, it’s like the last element of medicine so sometimes we are neglected. So, by the time they distribute some things within the hospital, they will think of palliative care last and we will not get whatever has actually been distributed to help in support of the patients” (Physician, Site B).

“The hospital doesn’t see palliative care as that. See the hospital even feels we don’t generate funds. They only allow us because they feel we are somehow in oncology. You know, that’s all. But they don’t feel we are actually, as far as we are not generating funds.” (Physician, Site D).

Most PC providers cited a shortage of specialists and the understaffed nature of palliative care units as significant challenges. Quite a number of the PC providers were not full-time; they divided their time between multiple units and took on other hospital assignments, resulting in frequent understaffing, work overload, and high turnover rates. Additionally, the high turnover rates were exacerbated by the migration of healthcare workers outside Nigeria due to the brain drain crisis, commonly referred to as “japa syndrome” in the country.

“The Japa syndrome has affected us, three of our nurses have gone and it’s only me that is left now, so we’re still looking for nurses. nobody to relieve me, that okay go and support her, I’ll say go to the ward and see, everywhere is short staffed. But when this japa syndrome started, since 2020 most of the people that we have trained, have japa. So, we have new hands-on ground who doesn’t even know or have what it takes to be a palliative or how to nurse a patient.” (Nurse, Site A).

Organizational structure

Providers reported a lack of formalized structures dedicated specifically to PC services as a barrier to accessibility. They described how palliative care units were often embedded within other departments, such as oncology, and typically limited to treatment rooms or small private spaces.

“The only thing management has given us is this room that has been there initially and this space, that’s all. No unit. We are just on our own.” (Physician, Site D).

Delayed referral

Regarding decisions about when patients should be referred to for PC, providers reported a limited understanding and a lack of clear referral criteria, which often resulted in delays. Both providers and patients noted that non-PC providers typically initiated referrals at late stages of the disease, when symptoms were more pronounced or after curative options had been exhausted.

“That is one of the challenges that we are seriously facing, the consult is the issue, because most of them when they see the impact of palliative care on their patient, they believe the palliative care would sustain their patient, and because of that, they hold on for most of them and most of the times that they’re supposed to release the patient to receive the best care, they hold on to the patient until when the patient is at the later end.” (Nurse, Site A).

Outer setting

Traditional care

Some patients reported resorting to traditional remedies after their diagnosis or during treatment, either because they could not afford ongoing medication or in hopes of finding a cure. This often led to inadequate treatment and delays in seeking palliative care, which could worsen their condition.

“We started treating the splenomegaly the native way. Even to the extent that they made me step on the stomach. So, before you know it, instead of it to go, things started increasing gradually gradually, and the boy became so weak that even the flesh you can’t see the flesh. He is very lean… people with this critical illness are not financially buoyant to take care of it. And by so doing they find a way to get alternative medication and before you know it the thing will give them up and they die.” (Caregiver, Site D).

Quality control of medications

Several providers expressed concerns regarding the quality and effectiveness of pain relief medications available across the country, specifically highlighting issues related to the potential dilution of drugs and the prevalence of counterfeit opioid analgesics. They emphasized the urgent need for high-quality pain relief options to ensure effective treatment for patients.

“The quality of drug, pain relief drug is an issue, take for instance morphine, is the most pain relief drug that they use here. But in my sister’s case, … we complained. You’ll find out that after giving you, or your patient morphine, the pain will still be there… So yesterday we complained, and they were like maybe it’s the way they dilute … you know even if all other drugs are inferior let pain drugs be original.” (Caregiver, Site E).

Characteristics of individuals

Knowledge of and beliefs about palliative care

Inaccurate knowledge and negative beliefs toward PC among non-PC healthcare providers included equating PC to giving up or end-of-life care; these were identified as significant barriers that limited PC uptake early in patients’ illness trajectory. Similarly, most patients and caregivers reported initial hesitancy towards receiving PC due to lack of knowledge and understanding, associating such services with negative connotations of death, loss of hope for finding a cure or treatment, and managing terminal illnesses.

“[A caregiver] was saying they told her palliative would be coming to see her sister, she just remembered that palliative is just something [about]managing, managing. It means her condition cannot be resolved so they’re going to be managing it until she dies. That is the impression because she has heard, you know the Nigerian factor, they’ll say go and palliate that road, go and palliate this place, go and palliate, they know it’s not the lasting solution, but you’ll just manage. They all know palliative as managing. So, if the patient is someone who has heard that word before, they will relate it to that situation and say, it means this thing there’s no lasting solution to this, it means you’re going to be managed…and it really affects them.” (Nurse, Site A).

This perception prompted a PC provider to question whether “palliative care” is the most suitable term to describe the services offered by the PC unit. One provider explained that “Immediately when patients hear “palliative,” they think we are sharing rice and beans” (Physician, Site D), referring to the government’s palliative program during the peak of the COVID-19 pandemic, which focused on addressing social welfare needs of Nigerians.

Attitudes towards palliative care among non-PC providers

Several PC providers described issues concerning collaboration and coordination with non-palliative or referring providers, noting that PC services were perceived as interfering with patient care or overstepping boundaries. As a result, there was a lack of acceptance of such services among non-palliative health providers, contributing to delays in patients’ referrals, and reluctance to request PC consultations for patients who might have benefited from such services earlier.

“The co-worker would have even, poisoned the minds of the patients and the relation, so for them to come here [PC unit] would be a problem. We will see some doctors, [when a] patient needs palliative care. In fact, they will say “palliative care, that’s the end. If the patient has not gotten to the end stage, don’t send them to palliative”. You will see a consultant who will be telling me that I want to trap his patient.” (Nurse, Site A).

Patient and caregiver experiences with non-PC providers

Prior negative experiences with providers were reported to have influenced patients’ attitudes toward initiating PC. Some patients and their caregivers felt that they received minimal support from their primary care team following diagnosis of illness.

“There are differences between the ones here and other nurses or other staffs [in the hospital], that when you are in the ward, they treat you like a nobody, they will be shouting at you like you are a nobody, in fact they will neglect you even if you are dying.” (Patient, Site C).

Palliative care provider attitudes

Majority of patients and their caregivers described the quality of care received from PC providers as exceptional, stating that they felt “loved” by the staff and experienced a more responsive care environment, which was unprecedented for many. Characteristics used to describe PC providers included “loving”, “caring”, “compassionate”, “dedicated”, “encouraging”, “kind”, “friendly”, and attentive listeners who cater to their needs.

“I’ve been through a lot but when I got to their [PC]unit, they don’t only deal with medicine there. They do not only prescribe medicine. Their doctors will come, their nurses will come, they will give you comfort words, that you won’t feel less loved, they will converse with you in a lovely and comforting manner, they will explain to you if you feel any pain…so they are really trying amongst every other unit in the [hospital], I will like to say they are still the best.” (Patient, Site A).

“For the few days and weeks, we have been in this unit called palliative care, we have seen number one the love. Number two, I have seen their care, prayers and very importantly their huge smiles on our lives. At least that quality goes a long way.” (Caregiver, Site D).

Notably, most patients and their caregivers reported a significant change in their initial perceptions of PC after being admitted to the unit. There was a more positive attitude, a shift they attributed to interactions with PC staff and the quality of care received by their providers. A few patients expressed that the staff in the PC unit were more accessible than those in other departments, and they benefited from the multi-disciplinary team approach to care.

“This department is loved, because they come in [as a] team, they’re so caring, because the first day they came, there were five individuals, after that the following Monday when they came, they are not less than ten. I am surprised about the pamper[ing] and care…they are one of the best departments.” (Patient, Site A).

Financial constraints

Most patients and caregivers expressed financial constraints that often limited their ability to access PC services and medications. PC providers corroborated this concern, highlighting that many patients admitted to palliative care faced difficulties in meeting basic needs and affording treatment due to their inability to work because of their illness, further exacerbated by the prevailing national economic conditions.

“For patients most of them they cannot afford the narcotic drug most especially when they are in excruciating pain, and we have drugs for them to go and for sure some of them they cannot afford it, so the financial constraint is there.” (Nurse, Site C).

Process

Systematic PC education & training

While many PC providers reported some prior training in PC, most highlighted a lack of systematic education and training on these services within the hospital and education systems for other providers. The majority indicated that they received their training or certifications from accredited institutions outside Nigeria. All providers expressed a strong desire to learn more about PC services to enhance patient quality of life. To address this need, they suggested creating robust, PC-focused training programs, including in-service training and booster sessions that could be integrated into onboarding processes or routine departmental meetings to further improve their knowledge and skills.

“You know palliative training is a problem, the fact that in Nigeria presently there’s no place where there’s training or a certificate course training, most of the training that we did are short courses…but as it is now, we can’t do the training here [in Nigeria], we have to go outside the country.” (Nurse, Site A).