Attitudes of primary care providers on early palliative care, in new community settings of Attica, Greece; a qualitative analysis.

Background: Early provision of palliative care globally can be achieved by primary health professionals. In Greece, a primary care reformation is currently under development; novel community units have been introduced, with the family physician working for the first time with an interdisciplinary team. Objectives/Setting: To explore the attitudes of such providers, on early palliative care in Attica. A clear understanding of primary care workforce attitudes would facilitate the National primary care strategic development. Participants/Design: Qualitative research design, with 3 focused-groups of 23 primary health care providers, including family physicians, nurses, health visitors, administrative assistants and sociologists. All were members of the Hellenic Association of Research and Education in Primary Care. Semi-structured question guides were used. Experiences, practices, needs and barriers were evaluated. Responses were audio recorded, transcribed, grouped under various themes, listed out and analyzed, through thematic analysis.
Results: Three major themes were identified and all teams were able to: 1) Identify patient and family populations with palliative care unmet needs, early at diagnosis. 2) Respond to those needs by the holistic model of care and integrate strategies of early palliative care, working as a team. 3) Recognize barriers to the best-possible approach: a) lack of education on severe pain and grief management, b) lack of collaboration with experts, and c) instability of governmental decisions. Conclusions: Teams of primary care providers in Attica, could integrate early palliative care. Issues to be addressed include further education on pain and grief management, collaboration with palliative care experts and stability. Copyright:

Introduction

The central role of primary care in delivering health care for all has been declared at the Alma Alta.[1] Recently, the 2018 Astana Declaration, further supported the commitment; ‘to meet all people’s health needs across the life course through comprehensive preventive, promotive, curative and rehabilitative services.’ The Declaration prioritized universal health coverage, but also demanded the equal distribution of palliative services.[23] The recent definition of palliative care includes its implementation early in the disease diagnosis, in conjunction with other therapies, regardless of prognosis. Furthermore, it includes symptom prevention and management in life-limiting, life-threatening diseases, other than cancer.[456]

Despite the fact that a growing number of persons have chronic diseases and multimorbidity globally, and the aging population, primary care and even worse palliative care are not available, as human rights to all.[7] In Greece, both practices present with a huge gap.[8] Greece, due to the economic crisis, refocused its reform efforts on the National Public Primary Health Care Network.[8] During 2017, the Greek Government initiated the opening of more than 200 novel Local Primary Care Units-based on an interdisciplinary team throughout the country, jointly funded by the Greek State budget and the European Social Fund (ESF), under the National Strategic Reference Framework.[8] The innovation focused on the development of a team-based primary care delivery model (with physicians, nurses, health visitors, sociologists and administrative assistants working as a team) that emphasized coordination to improve outcomes.[8]

As a result, we hypothesized that such primary care workforce could integrate early palliative care in the community. We further hypothesized that these structures and processes could systematically achieve proactive basic palliative care provided by non-specialists. In an effort to explore our hypothesis, we asked them about their perceptions; we aimed to explore their attitudes on early palliative care and how it relates with chronically ill patients and their practice. Good empirical insights of workers in the new settings of primary care, could eventually help new policies implementation in the future.

Patients and Methods

We used a qualitative descriptive approach to explore the care context in the community settings. The main researchers’ expertise comprised primary and palliative care. IP is a physician with a certificate of added qualification in Hospice and Palliative Medicine, while EL practices Family Medicine. GK is an experienced pharmacist in qualitative research.

3 focus groups were performed; clinicians were recruited by the Hellenic Association of Research and Education in Primary Care Society. General practitioners, nurses, health visitors, sociologists, and administrative assistants were selected, by prioritizing context variation through deep rather than broad sampling. We focused on providers with more exposure to the new team-based units, and to those who have had prior experience in palliative care; they would eventually be more familiar with practice changes and integration of such care in the primary setting. They voluntary agreed to participate to the study after talking with and invited by the primary investigator (IP), during February 2020. They received a form containing information about the study and an informed consent form to complete, if they decided to participate.

Qualitative methodology was chosen to allow the exploration. No other regions in Greece were included, due to practical reasons. Furthermore, the needs in urban and sub-urban regions are different, and the majority of the Greek population is living in Attica.[8] The interviews focused on the interconnectedness of palliative with primary care, the targeted patient and family populations and their needs, the possibility of providing such care in the community, as well as the anticipated barriers. A brain-storming meeting with all the investigators took place, so that the introductory, main and closing questions were planned and reviewed. All focus groups interviews’ purpose was the same and performed in a non-threatening environment with the presence of the principal investigator (IP) and the mediator (GK). The main researcher provided oral and written information on the study, explained its purpose and scope and introduced the mediator; the latter noted the demographical characteristics [Table 1]. After an introduction, participants were encouraged to give their opinions and comments to each question. Participants were probed till adequate responses were obtained. When there were no more responses, the group went on to the next question. Focus groups were conducted until the researchers agreed that all the participants expressed their views and theoretical data saturation achieved. Each focus group lasted from one hour to 120 minutes, and was performed between February and March 2020. The open-questions’ interview guide can be found at the Appendix; each responder could express his experience, feelings or concerns. Interviews were recorded and professionally transcribed by the mediator. Responses of the participants were grouped into various domains and analyzed by the first two researchers independently and then verified for differences. The mediator also noted down the main points on the responses of participants. Transcripts were not returned to the participants for further comments or feedback. Data was analyzed using analytical methodology. Content analysis was done manually based on the responses obtained under each domain/theme, using thematic analysis. The two main researchers independently derived initial codes from data. They discussed similarities while coding, as well as differences. The principal investigator performed subsequent focused, thematic coding. Research meetings were performed to review emerging themes, to clarify the areas of agreement/disagreement, as well as the potential of establishing strategies. The results would be part of the primary investigator’s leadership at the European Academy of Palliative Care.

Table 1

Health care professionals’ characteristics

1st focus group	n	2nd focus group	n	3nd focus group	n
Male	1	Male	0	Male	1
Female	6	Female	8	Female	7
Age		Age		Age
<30	1	<30	4	<30	3
30-45	5	30-45	3	30-45	3
45-60	1	45-60	1	45-60	2
Profession		Profession		Profession
Physicians	1	Physicians	4	Physicians	4
Nurses	2	Nurses	2	Nurses	1
Health care visitors	2	Health care visitors	1	Health care visitors	1
Administrative assistants/sociologists	2	Administrative assistants/sociologist	1	Administrative Assistants/Sociologist	2
Level of education		Level of education		Level of education
Degree	2	Degree	5	Degree	4
Master of science	4	Master of science	2	Master of science	3
Doctoral thesis	1	Doctoral thesis	1	Doctoral thesis	1
Years of working experience (in total)		Years of working experience (in total)		Years of working experience (in total)
<5	1	<5	0	<5	0
5-9	3	5-9	5	5-9	4
10-19	3	10-19	3	10-19	4
Years of primary care practice		Years of primary care practice		Years of primary care practice
0-4	3	0-4	4	0-4	3
5-9	2	5-9	3	5-9	3
10-19	2	10-19	1	10-19	2

n=number of professionals

Appendix

Questions Asked during the Focus Groups

Initial questions-introductory	What type of clinician are you?	What does palliative care mean to you?
	Tell us about your working experience	When someone uses the term palliative care, what comes to your mind?
	What about your experience/training in palliative care?	Do you work as an interdisciplinary team? How would you describe the term ‘interdisciplinary’?
	What is your training on communication? Do you feel comfortable in communicating with patients and families, during diagnosis?	Do you treat patients and families not approaching the end of their lives?
Transitional questions	Do you believe that primary and palliative care share common principles?	Do you recognize palliative care patients at diagnosis during your daily work at the primary community settings?
		Thinking back in the last year, can you describe patients with chronic illnesses that you cared for?
		Which patient groups were common? Did they have one or more illnesses?
Main questions-central points	Do you believe you provide care to those patients and family?	In what ways?
		How are you able of providing care?
	What do you believe is lacking in providing such care?	Do you provide care on your own?
		PROBES: Physical symptoms? Emotional/spiritual issues? Social issues? Family support? Practical problems and/or needs?
Final questions	Would you like to add something?	PROBES: How is your practice structured? What else would you like to provide to those patients/families? What barriers have you confronted in your daily practice? In collaboration with experts or treating physicians?
Closing remarks	How are you feeling?

In Greece, ‘the Hellenic Society for Primary Health Care Research and Continuous Education’ reviewed the study protocol. Both its Board of Directors, Human Research Ethical and Scientific Committee, approved the research (no2, 16/02/20). Furthermore, the Scientific Committee for Primary Care of the 2nd Health Care district of Attica, provided ethical approval (no. 315, 03/03/2020).

Results

A total of 23 healthcare professionals were recruited. All participants were aged less than 60. The majority were female and with a working experience of more than 5 years [Table 1].

We identified 3 main themes from the focus groups:

1. Recognizing populations with multidimensional palliative care needs, at the time of the disease diagnosis.

2. Responding to those needs by integrating strategies of working as a team and with a new model of holistic care.

3. Introducing barriers to delivering the best-possible early palliative care approach.

Recognizing patient populations with palliative care needs to be addressed, from the disease diagnosis.

All primary health care providers were able to identify patients and families with life-limiting, life-threatening conditions in need for palliative care, by the time of the disease diagnosis. Interestedly enough, health visitors and sociologists identified and other vulnerable patients with disease burden in need for integrated palliative care in the community; they suggested that patients and families with rheumatic diseases and symptom burden, diabetes mellitus with complications, other rare chronic diseases with no radical treatment (with physical or intellectual disabilities) and mental illnesses could be palliated.

Even when patients were at the disease diagnosis, they foresaw the possibility of their being more fragile in the later stages of the disease trajectory, they recognized the symptom burden. Responders saw patients and caregivers’ unmet needs in a holistic approach, in multiple dimensions. Physical symptoms such as pain, shortness of breath, fatigue, constipation, fever, and/or weight loss were mentioned by all. They also stated that patients had psychological needs to be addressed, such as anxiety and depression. Most of patients and families were anxious at diagnosis, at recurrence/relapse, or even before performing their routine laboratory examinations. Patients’ social and practical aspects of daily living were interrupted, due to their disease. Being depended on others, feeling a burden, financial problems, and unmet spiritual needs were mentioned.

Responding to those needs with a new model of holistic care, while working as a team and identifying strategies of integrating early palliative care [Table 2].

Table 2

Strategies of integrating early palliative care, when working as a team of primary care providers

Similarities between primary and integrated early palliative care	Clinical characteristics	Value of team work
1st major theme	Patient-family centered, humanistic, relationship-based care	Team based
2nd major theme	Multidimensional management of symptoms- treatment and palliation, based on the continuity of care, the on-going assessment and re-assessment, availability and accessibility, the communication in case of an emergency, the self-care, along with the support of the informal caregiver and the psychosocial support	Team based
3rd major theme	Reducing health inequalities, with being free-of-charge; equality in treatment management by financial reimbursement by the government

Participants responded that they did as best as they could to address multidimensional needs: physical, social, psychological, practical, emotional and spiritual of patients’ and families. They emphasized the importance of a team-based care. Since the symptoms and needs of patients and family were multidimensional and the approach holistic, they insisted that a one and only health care professional would be uncapable of providing that care.

They emphasized the value of team work; the family physician was able to treat etiologically and/or symptomatically patients’ physical symptoms, while the team enlarged care. Nurses assessed and re-assessed symptoms in all domains, not only physical, but psychological and practical ones. Health visitors helped patients to arrange their appointments and laboratory examinations, and along with nurses to educate patients and caregivers at practical issues, such as self-care, house-keeping, and hospital visits. Social workers were mostly involved in psychological issues; coordinate care, enhance communication with patients and families, and identify community resources.

Participants did not typically view themselves as providing palliative care, they stated that they simply assessed patients’ and family’s needs in their primary community setting. Family physician: ‘I find it just part of general practice. I do not see it as something different, at early disease diagnosis. Medical treatment is based on individual needs and continuous, on-going assessment is offered. We seem to put everything in order. We are in close collaboration with treating physicians, neurologists, pneumonologists, and cardiologists, in particular’. Nurses: ‘Assessment and re-assessment are always part of our work, continuous re-assessment of the plan, based on individual patients’ and family problems and needs. At each visit, we have to develop a new plan of care depending on patients and caregivers developing needs. We know the patient and built a relationship of trust, self-training, and self-care. Usually, the same happens with his/her family; here in Attica the relative might be present more often than the patient’.

Still, physicians and administrative assistants described a lack of comfort and experience in having in-depth conversations. Controversies on the definition of the interdisciplinary team and the role of the team coordinator were also found; physicians suggested that nurses could be the leaders, since they are closer to patients and families and the model is not and should not be physician-oriented. All, but health care visitors, insisted that team roles should overlap, based on solidarity, interaction, collaboration, co-operation, as well as mutual help. On the opposite, health visitors suggested that: ‘Team roles have to be clear. They cannot overlap. We need team cohesion, but with clear roles and boundaries; otherwise, chaos would result’.

Barriers in early primary palliative care provision [Table 3].

Table 3

Important barriers in Attica, when providing primary, early palliative care

Aim	Identified themes	Main findings
To identify barriers in primary care and early palliative care provision	Insufficient:	More formal education on palliative care in primary care, at pre- and post-graduate level
	Official Education
	Communication skills
	Definition of the interdisciplinary team and the role of the team coordinator
	Practice Coaching
	Organizational issues from the government	Instability-uncertainty for the evolution of the primary care reformation
	Lack of collaboration with the few palliative care experts

Discussion

This study tries to identify the close relationship between the primary care reformation and early palliative care, from the providers perspective in Attica. The findings are unique, since such an interconnectedness in Greece, has never been evaluated. Professor Lionis[8] had extensively investigated the status of primary care. Greece had been classified among the countries with weak primary care in terms of access, continuity, and comprehensiveness.[9] Establishing a fully operational and sustainable primary health care system in Greece was stated by those experts as more relevant in 2017, than ever before.[8] A previous survey had revealed serious and persistent barriers of achieving health care for all, primarily based on access to physicians and financial concerns. These have changed the attitudes towards general practitioner (GP)-led care pathways.[10] Thus, a growing evidence supported that a GP-led pathway to care could act not only as a means to improve access to care for all, but also as a vehicle to guarantee fiscal sustainability for the health system as a whole.[10] Management of chronic diseases’ symptom burden, of mentally ill and/or disabled, as well as of migrants and refugees, along with integrated palliative care, is part of the primary care reformation responsibilities.[8] During primary care reformation, physicians are, for the first time, working with an interdisciplinary team in the community setting; nurses, sociologists, health visitors, and administrative assistants.

Palliative care is also at an infancy state in Greece, despite the fact that growing number of people have chronic health conditions with multidimensional problem issues. The World Health Organization has recognized the access to palliative care services for all and the patient centric primary care model (PCCM) promises to provide a solution to control these health-care challenges.[11] Multimorbidity is common and patients and caregivers with life-threatening, life-limiting conditions represent a major challenge for the community health care services.[8] Poverty, demographics, health care expenditures, and limited resources as well as capacities are pressures that the Public, National Health System faces.[8] Palliative care improves the quality of care for patients with serious conditions, by assessment and management of their physical, psychological, social, and existential needs.[511] Since inequalities exist in provision of care, patients with multimorbidity or non-malignant conditions are unlikely to receive such form of care.[12] Professor Murray and his colleagues have proved that family physicians can traditionally provide care, including integrated palliative care in the community.[34671213] They suggest that palliative care sits comfortable within primary care[6]; early or integrated palliative care could begin from the disease diagnosis, within the community.[13]

Our study analyses the attitudes of primary care professionals on a variety of issues, for the first time in Attica. All primary care providers considered that the nature of whole-person-care is important and characterizes family medicine. The focus on treating patients as individuals and the importance of the patient-based relationships reflect previous literature review findings.[1114] The current results further emphasize this finding, along with a team-based approach. The findings also share close similarities with the core values of general practice and early or integrated palliative care.[47111213] They emphasized treating the whole person within the context of their illness, the continuity of the relationship, the holistic approach, the coordination of care and the shared-decision making. Similar findings were found by other researchers.[1115] Primary care providers mentioned the importance of accessibility, the reduction of inequalities and the symptom management in all dimensions.

Several aspects of our findings deserve further discussion; the diseases to be dealt with, communication and the role of the interdisciplinary team. As far as the first issue was concerned, interestingly enough, providers mentioned that integrated primary palliative care could focus on patients with other disorders, due to symptom burden, which are not traditionally classified as life-limiting, life-threatening.[5] This was probably due to their working experience or even because people poor, without insurance and disabilities were visiting the settings. Physicians felt insecure in the communication encounter. Breaking the bad news is not easy in the Greece, the ‘conspiracy of silence’ is often noted; family members try to overprotect patients. As far as team work was concerned, the early palliative care approach was reached only with the introduction of the ‘team’.[15] It was questionable whether providers would agree that the physician is the ‘conductor of the orchestra’ and the very well-defined versus overlapping roles.[16171819] Still, all were certain that either form of care could not be provided by a one and only professional. Our results indicate that health care providers value team-based care as integral to primary[15] and early, palliative care[41318]; the team was responsible for reducing symptom burden and achieving holistic quality of care.

Barriers in provision of care were found.[19202122] All mentioned governmental issues; lack of stability and precise plan. They also felt disappointed by the lack of specialized palliative care units and collaboration for support. They emphasized the importance of a centralized and well-managed mechanism that would allow structures, institutions and care providers to cross-talk.

Our study has a lot of further implications. Orientation of primary care to address major health issues (from cancer to frailty) with interventions encompassing the biopsychosocial model cannot be underestimated.[19] The high percentage of people with life-limiting, life-threatening conditions in the community necessitates more sophisticated team-based mechanisms to coordinate care. Coordinated actions for integrated chronic disease care in the spectrum of early palliative care can be achieved, through an interdisciplinary primary care team. This recommendation addresses the clear need to retrain the primary practitioners with a focus on developing a team and a culture of interdisciplinary collaboration, Coordination of care by the regional and local health authorities in order to link health care services with other domains and sectors that impact both disease management, and specialist palliative care experts are warranted.

This study has strengths and limitations. Theoretical saturation was reached, consistent with qualitative methodology, suggesting that these focus groups represent the participants’ views. Still, it is possible that providers chose to participate, because of their interest in palliative care or that participants recruited through similar avenues had shared perspectives, and that the data reflect their views. Limitations include that no participants were recruited from other regions, outside Attica, so a reasonably broad demographic was not included. We believe that these qualitative results provide valuable information on their own.

Conclusions

Tailored-made early palliative care is highly valued in primary care, based on a holistic management of patients and families. Early palliative care provision is feasible with the introduction of an interdisciplinary team. Family physicians can achieve (PCCM) with the value of a team. Stable governmental policies in the future primary care reformation are warranted, as well as collaborations with palliative experts.

Declaration of patient consent

Participants informed consent was obtained, while no patients or informal caregivers participated at the study. The ethics approval was obtained, according to the Helsinki Declaration. The research protocol was presented to and approved by the Hellenic Association of Research and Education in Primary Care Human Research Ethics Committee (no2, 16/02/20), and is part of the European Academy Leadership Program (EUPCA) of the Principal Investigator. Furthermore, the Scientific Committee for Primary Care of the 2nd Health Care district of Attica, provided ethical approval (no.315, 03/03/2020).

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.