Background
Palliative care considers the patient and the family as the focus of care and includes the bereavement period. The family members provide and receive care as the illness of the patient influences their own lives and roles. In this sense, family carers’ perspectives help us to understand palliative care as the families witness and also take part in patients’ care. The family values the care that the patient receives [
1], so they should be included in trying to identify factors of quality of care [
2‐
6]. Results of studies suggest that a family carer’s mood and grief can influence in his/her assessment of service provision. Despite this, family carers have been identified as a valid and vital source of information [
7,
8]. Family carers, are those with close social and /or emotional, but not necessarily blood relations to the patient; they can be important sources of information [
9], and they are even more relevant when considering situations in which the ill person has been cared for at home, where these carers play, arguably, the most essential roles.
Family carers face multiple challenges assuming a carer role and often may feel unprepared [
10‐
13]. Palliative care home services have been developed to support patients and their families at home during advanced and terminal disease, and care can be delivered in a variety of different ways (i.e: home care teams attached to inpatient hospices, community hospice care agencies, hospital-based community support teams and hospital at home services).
It is important to assess the quality of care of palliative care home services in terms of what quality of care means for patients and their families [
5]. In order to avoid reductionism, qualitative methods have been proposed [
14] showing people’s views within a wider context [
15] and exploring more than just “structure”, “process” and “outcomes” of quality of care framework [
16,
17]. Inductive approaches can inform alternative approaches to measuring the quality of palliative care services. They can promote, assessing all dimensions of care, as the Council of Europe encouraged [
18], especially since tradicional health indicators [
17] such as death or recovery rates, or even place of death [
19] might not be appropriate as quality indicators in palliative care. It is now recognised that quality of care evaluation is moving away from performance measurements, uniformity of services and standardisation of processes, to providing a greater focus on care [
20], covering the full range of aspects needed for quality end-of life care [
21].
In fact, there are increasing studies reporting on how palliative care home services are valued by patients, families and health professionals. Studies involving quantitative approaches have generally shown positive impact of these services. A Cochrane review evaluating impact of palliative care home services including 23 studies with patients with different advanced conditions showed significant beneficial effects of the service on reducing symptom burden for patients; although there was no effect on caregiver grief [
22]. Value of these services has been reported also on aspects such as: advanced directive completion, site of death, symptom severity over time, program satisfaction [
23], and hospice referral and average length of stay [
24]. More recent studies using inductive approaches provide a complementary view of these services’ value for family carers. Twenty interviewed family carers’ highlighted aspects such as experiencing a valued presence and not feeling alone and vulnerable, enabling brief periods of rest, and supporting their normal life routines and carrying out different responsibilities [
25]. Another study elicited patients (
n = 16) and family carers’ (
n = 5) experiences with hospice at home care. Embracing holistic care was the overall key message. Participants value talking about difficult discussions such as death and dying, feel that patient and family carer situations are better understand and their needs and wishes remain central to their care. They also valued the expertise of nurses as they ensured symptom control and guided them in navigating them towards appropriate services. Participants also reported the importance of promoting choices and enabling them to meet their needs at home, preventing unwanted hospital admissions [
26]. Family carers express appreciation when health professionals are competent and flexible, and have appropriate communication and carer involvement. They enjoy and desire good relationships with health professionals [
27]. Other studies provide a more complex view of home care and raise the difficulties that family carers encounter in accommodating a relative being cared for at home, such as moving in of important objects needed at home and the painful reminder these objects reflect when the loved one passes away, as well as the changes in identities as they assume new roles as carers versus their previous role as wives or husbands [
28].
A better understanding of what families’ value most from palliative care home services can be the first step to identify key aspects of quality of these services and promote aspects of excellent care. Considering family carers’ spontaneous letters and notes about their experience with the home palliative care provides an innovative way of assessing this type of service. The letters transmit what families carry with them during the bereavement process and can be considered as having a special value as writing letters is a self-initiated act and is open-ended in terms of its contents (e.g. may range from thankful to aggressive). Grateful family carers can be a source of information about what aspects are valued positively and can direct palliative care home services towards the care that patients ultimately want to receive.
A series of letters of gratitude have been identified by the authors in palliative care services in many different places as far apart as Cape Town (South Africa), Stockholm (Sweden) or Las Palmas de Gran Canaria (Spain). In palliative care, gratitude from patients or their family carers constitutes a reality that often occurs during the mourning process of families who must fully face the intensity of palliative care. A previous study of our group on a different collection of letters gave us the opportunity to explore and reflect on the deep experiences of the family in palliative care [
29]. Here, we are using a different focus looking at their vision of what kind of quality of care was received. Considering that the information was provided voluntarily, it may contribute to an increased awareness of family carers’ views on the services received. The current study is especially relevant as there is a lack of studies on opinions provided spontaneously by users of health services. This study’s objective was to analyse what is valued most by grateful family carers undergoing the bereavement process of a palliative care homes service, in order to identify factors of quality of care.
Methods
A qualitative exploratory study was conducted to learn from family carers’ spontaneous writings about their experiences with the palliative care home service using an inductive approach.
Study context
The Ongoing Integrated Care Team of Odivelas (ECCIO) was a pioneer team in the area of health care at home in Portugal. It gave assistance to the population enrolled in the primary care center of Odivelas (120.365 people were enrolled there); situated at the north outskirt of Lisbon. The population attended by the team was composed of mainly elderly persons with limited economic resources and education.
The ECCIO was developed in response to the home care needs of an increasingly aging and dependent population. The ECCIO was a multidisciplinary team that was made up of a doctor, nurses, a social worker, a psychologist and other workers, all with specific training and over 8 years of palliative care experience as a group. One thousand patients were cared for each year.
Patient admition criteria included: being a resident in the geographic area of Odivelas and enrolled in the primary care center, having an advanced disease leading to physical dependence, and having at least one carer at home.
The goal of the team was to provide direct health care at home in the field of promotion, treatment, rehabilitation and palliation; providing support and information to family; monitoring patient care, and coordinating between the different health professionals and other institutions. It was the first team providing health care 24 h a day, 7 days a week, to cancer and non-cancer patients. The team provided scheduled health care to patients from 8 am to 8 pm every day; and emergency care around the clock being a nurse the contact.
In case there was need for personal hygiene, food hygiene or housing, social support agencies were contacted, including a combination of public and private agencies who provided nursing assistants to help those with special needs.
Population and sample
In the period under study, the ECCIO attended over 130 end-of-life events, 85% of whom passed away in their own homes. The majority of the patients had cancer (with many symptoms) and most of the rest were brain stroke victims. Most of the patients were older than 65 years.
Primary family carers were mostly wives, above 65 years old, generally from low to low-middle class backgrounds with little education. But they often had the support of other family members such as son/daughters or neighbors, and therefore, there was strong social support. These details are extracted from the annual activity report of the service to which MAP had access with the permission of the service.
The sample includes all written gratitude documents sent by patients’ family carers to the ECCIO team since its founding in 1998 until the year 2006, expressing their gratitude to the health professionals for the care provided. Letters from families on personal matters to individual members of the team were excluded. The authors actively looked for complaint letters during the study period, but none were found.
Data collection and analysis
The gratitude letters received by the palliative care home service were filed by the team, independently of their length. The documents were sent to the ECCIO and some were published in local newspapers, and a copy send to the ECCIO. The original documents were copied and anonymised. The original quotes were in Portuguese and have been translated from the original. The documents were written by the family carer. During the analysis of the data no repeated surnames were identified on the documents. On the basis of this and that often the person writing the letter said that he transmited gratitude not on his/her own name –referring to the kinship with the deceased- but on behalf of the whole family, we assume that each document belongs to a different family, but there may be exceptionally more than one letter from a family.
A document analysis was conducted, which is a systematic procedure for reviewing or evaluating documents [
30]. As in any other analytical method in qualitative research, it involves examination and interpretation to elicit meaning and gain understanding [
31]. The letters had been developed without researcher’s intervention, so we used them to see what family carers mention spontaneously without any external intervention. Documentary analysis have been previously used in other contexts ie. service use among families living in poor urban communities [
32].
The whole documents were used for the analysis. It was expected that the letters will reflect the positive experiences of the work that the home team of palliative care service conducted. No predefined list of possible key categories was used. It was thought that categories different from previous work could emerge as the setting was different. An inductive approach was used to explore the key aspects that family carers highlighted from their experiences that were embedded in the letters. The content analysis carried out was based on Burnard’s guidelines [
33]. He describes 14 stages of the qualitative analysis process, including the writing. He proposes immersion in the data, reading again and writing down as many headings as necessary to describe all aspects of the content, reviewing list of categories and grouping together similar categories and removing repetitious or very similar headings. Several colleagues analysed the documents independently and lists of categories were discussed and adjusted as necessary. Data was re-read alongside the finally agreed list of categories and sub-headings to establish the degree to which categories covered all aspects of the data. Each data set was coded and all items of within each code were collected and all the codes filed together for direct reference when writing up the findings and selecting examples from the data.
Rigour
Information is provided about the type of document and the possitive nature of the documents. All the documents were analysed in full. All this promoted confirmability. The letters published in newspapers were often cut out and sent to the palliative care home service, so that it could be argued that it really transmited patients’ families views and that their messages were not altered at the point of publication.
Reliability was enhanced through investigator triangulation [
34]. Three researchers read the original unidentified texts, performed an independent analysis and agreed on the descriptive categories, and subcategories, to be used. All the information in the documents was verified as having been suitably coded and represented in the categories. These categories were finally defined by mean of discussion and consensus among several researchers not involved in the care of the patients. During the entire analytical process, reflexivity was encouraged through ongoing debate among the researchers [
35].
As well as the content analysis, a count of the number of appearances of each sub-category in the documents was kept in order to identify the frequency with which the categories are referred to in addition to its discursive value. Irrespective of their frequency, all aspects mentioned by family carers in the documents were considered when developing the categories. The quotes are examples of the categories.
Transferability was promoted providing a rich description of the context and the data, and the discussion of the result with what is known so far [
36].
Approvals and ethic considerations
At that time the approval and assessment process of studies was performed by the centre management board. The project and its procedures were reviewed, and written approval was obtained by the management department of the health centre that ECCIO belongs. The project did not involve intervention of human subjects so this approval was considered sufficient by the health centre. Confidentiality was assured and there are no identifiable details within the manuscript. In fact the documents have been identified by number and initials according to the type of document.
Discussion
This study shows that some family carers highly value their experience with the palliative home care team. They specify the contribution that the team made from their perspectives and congratulate and encourage health professionals to continue working in the same manner with other families. All this is reported with adjectives and certain familiarity in the language that recalls a good patient/family-health professional relationship. The relational component acquires more relevance when the messages of support are considered. Family carers transmit a need for reciprocity, to provide something back, which happens within any good relationship.
It is noteworthy that within the positivism of the documents, there is also recognition of the difficulties of the situations faced caring for loved ones at home, which is also reported in a comprehensive review of the literature on home-based care giving at end of life [
37].
Family carers transmit an overall positive view of the services received, which is consistent with the Cochrane reviews on palliative care home services [
22]. However, the wordings used such as ‘from the bottom of our hearts’, recall deep interpersonal positive experiences. Within the overall satisfactory comments family carers highlight the humanity and professionality of the palliative home care team professionals, a combination that Cicely Saunders [
38], pioneer in palliative care, always considered essential and advocated for in an interpersonal relationship between the ill person and the health professional. She believed that the person of the health professional could be sometimes the best medicine. The combination of professionalism and humanism echoes one of the statements of a review on palliative care home services that affirms that it is important to see improved quality of life and enhancement of human dignity as a result of palliative care home services [
39]. One particular aspect, the patient’s perception of dignity, has been shown to be influenced by the type of interaction that occurs between the ill person and others [
40].
Family carers spontaneously specify what the palliative care home service has achieved and attribute all merit to the team. Lessening patient and family carers suffering through health professionals’ accompaniment is one of them, as families felt helped and felted a sense of solidarity. Literature about family carers says that carers have different support needs because of the risks associated with increased burden, depression or physical tiredness [
41,
42]. In fact, studies about hospice at home services point out that family carers highly valued having brief periods away from the ill person. Health professionals enabled family carers to have brief periods away for the ill person, providing some respite and supporting life outside of the care-giver role [
25]. However, in the current study, this service was not available but the carers still felt supported. They felt cared by the health professionals but also felt that they had enhanced their capacity to face various difficult situations. Thus, it could be argued that they felt as though they were participants along the process, which requires building relationships.
The fact that their loved ones were able to die at home was another achievement mentioned by family carers. However, it was not mentioned so often as expected based on the literature, where it has been considered as a key quality care indicator. It might be that, as Pollock [
19] suggests emphasis on place of death overlooks other aspects of care that may be important for family carers. Considering that among the factors influencing place of death are the illness, the individual, and the environment (healthcare input and social support), it might be worth considering other indicators. Especially if it is taken into account that there is growing evidence that care at home may cause tensions and that social relationships shape decisions about place of care [
28]. This raises the question whether social relationships should be taken into account when assessing quality of care. In fact, in another study about family carers’ experiences about institutionalized palliative care services (hospice [
29], inpatient unit [
43]), families highlighted the importance of the warm environments that they experienced. The type of environment was not mentioned in the current study, probably because it was in patients’ homes.
Improving patients’ quality of life and well-being is another achievement that family carers mention. This is in line with a Cochrane review that examines home palliative care services measuring outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care [
22]. But unlike other qualitative studies, in the documents, family carers do not mention often specific symptoms, except for pain. They tend to refer more to the alleviation of suffering in all of its forms, which shows a broader concept of suffering than physical pain, requiring a more holistic approach. The relevance of holism emerges also in one study about patients’ and families’ experiences of a hospice home care service. There, this approach was identified as having a positive impact on emotional, psychological, social, and physical well-being [
26].
Considering all the achievements highlighted by the family carer, there is an underlying idea, that the relational aspect is key between the patient/family and the health professional. This is in accordance with the statement that quality in end-of-life care has more to do with relationships and communication between attending health professionals and the seriously ill patient and family than patient autonomy [
5]. In fact, from the perspective of patients, families, and health professionals, caring for the terminally ill patient as a whole person is essential. However, despite family carers’ emphasis on more relational aspects, these have received scarce consideration among quality indicators.
A limitation of the study is that using documents entails that there is only information on what is written, which varies in length and depth, and there is no possibility in clarifying or extending the information. But the available length of the documents also promotes prioritising and highlighting the most valuable and important aspects. The documents were produced for purposes other than research, which might be considered a limitation, but also a strength as there was no intervention [
31]. The documents only include positive perspectives as no negative documents were found, which might be because they were no negative experiences or because the negative experiences were sent to other regulatory bodies. Having included only the thankful family carers’ opinion is a limitation. There may be different perspectives, of those who send complaints or do not write documents, which might suggest other general dimensions that they might like to have included in order to assess the quality of palliative care received.
As mentioned earlier we did not have predefined list of possible key categories but not having reflected a priori on our pre-existing ideas is a limitation. The use of researcher triangulation may have decreased possible influence of our pre-existing unconscious ideas on data analysis. Future studies would benefit from identifying and including family carers with a range of experiences with different home-based palliative care services.
There is interest in knowing users’ views on the services received. Inductive approaches, like the one used in the current study are recognized as valuable. But rarely have comments -made by the users about the care received, without being asked about explicitily, been analyzed. Considering family carers’ spontaneously written documents can provide new insights into quality of care, as they provide different points of view and are sources of information on aspects of care that are important to them.
Elements of the relational component of caring for terminally ill patients and their family carers at home should be included. It could be argued that some aspects are considered when including in quality care questionnaires items such as bedside manner, common courtesy, and way of talking [
44]. Communication issues could be considered as part of the relational aspect, and that is what has been considered within the quality indicators but focussing mainly on informing and decision making [
44,
45]. More recently, aspects such as developing rapport, addressing expectations and listening actively have been included [
43]. But family carers’ descriptions point out that there is more beyond the human interaction between the patient/family and the health professional. Family carers highlight that palliative care home services have helped to improve their capacity to cope and learn to face various situations. Family carers need to feel reassured that the professionals would support them when needed in order to cope with caring for their loved ones at home [
46]. Therefore, grateful family carers’ comments could be considered when developing quality indicators about the outcome of care in relation to work with the family carers. All of this is in accordance with the idea of implementing quality indicators that are reflective of the scope of care [
47].
If patient and family carer want to be involved in the care process, taking into account aspects that they value most is a good starting point. It is essential to have in mind the importance of the health professional-patient/family carer relationship. This also has implications for health professionals’ practice, as often the pressure and limited resources, specially on a economic crisis period, can lead to focus on conducting tasks more than on caring for the person who is ill and his family.
Further research should include more palliative care units and explore opinions of those family carers who send complaints, or who do not write documents, to consider other general dimensions that they might like to have included in order to assesss the quality of palliative care received. It would also be interesting to assess if the positive documents sent by bereaved family carers have any repercussion on the quality of care that health professionals provide or in their motivations to continue caring for these type of patients.