Perspective on Care at the End of Life at Hospice Africa Uganda

Abstract

Background:

Since its beginning in 1993, Hospice Africa Uganda (HAU) has become a leader in palliative care in Africa. Despite this, there remains a sparsity of research elucidating the priorities of patients in their care at the end of life. This study aimed to identify those priorities in three groups: patients with life-limiting illness, their caregivers, and their healthcare providers at HAU, and thus to identify differences in what these groups find important in the last month of life.

Methods:

A Likert scale survey of 31 statements regarding end-of-life care was administered to 46 patients, 51 caregivers, and 25 healthcare providers at HAU in Kampala, Uganda and satellite locations.

Analysis:

Variations in the responses of the groups were analyzed using the Kruskal–Wallis test of variance.

Results:

Twelve of 31 items were significantly different, and frequency data were examined. Differences were found in categories of symptom management, future planning, and in preferred place of death. Of anxiety, pain, and shortness of breath (SOB), only control of SOB was widely agreed on as important by patients, although providers unanimously wanted to control symptoms. Many subjects in all groups found that funeral arrangements should be deferred. Most patients and caregivers felt as if dying in the hospital was preferable, whereas providers felt that home care was preferable.

Conclusion:

This study tells us that patients, caregivers, and healthcare providers often have different ideas concerning what is important in end-of-life care, differences that are unique to this population.

Background

Palliative care, global stage

The World Health Organization defines palliative care as a branch of medicine providing physical, psychological, social, and spiritual care.¹ This definition was accepted at the Declaration of Venice in 2006 and an initiative was set forth to bring quality palliative care and research to patients around the world.² Each year, an estimated 20 million people globally require palliative care at the end of life and another 20 million will require palliative care during life. Seventy-eight percent of these are in low and middle income countries, and only 14% of these needs will be met worldwide. On the African continent, HIV/AIDS accounts for 42% of patients who need palliative care, whereas cancer accounts for 16%.^3,4

The multifaceted care defined above meets many challenges when delivered in resource-limited settings. Such challenges include poor essential drug availability, quality monitoring, coordination between agencies, patient and provider education and biases, provider shortages, and lack of national strategy for palliative care delivery. Patients lack such basic resources as food, water, shelter, and experience financial losses due to diminished patient productivity, further limiting their access to reasonable comfort.^4–6

In Uganda

Uganda is one of only four African countries in which palliative care has been integrated into widespread practice and policy and is the only African country with a Global Atlas of Palliative Care rating of 4b.³ Censuses show between 38% and 46% of hospitalized patients in Uganda experience life-limiting illness, most commonly HIV/AIDS, cancer, and heart disease.^7,8 As of 2012, cancer accounts for 5% of deaths and HIV for 17% of deaths in Uganda.⁹ As survival from other infectious diseases increases, so do these numbers.¹⁰ These patients report need for symptom management, food, financial assistance, and spiritual guidance.⁸

Hospice Africa Uganda (HAU) is the major site of referral for palliative care in Uganda. Since its start in 1993, it has expanded to include divisions of clinical services, education, research, and international programs. It has provided primarily home-based care to an estimated 25,000 people with centers in the cities of Kampala, Hoima, and Mbarara. It employs a handful of physicians, clinical officers, and a team of about 20 nursing staff, as well as a social worker.

HAU also employs a small pharmacy, which reconstitutes morphine powder into liquid oral morphine for the entire country. In Uganda, the Ministry of Health has made oral morphine available to all districts with a palliative care nurse.⁴ Despite this progressive policy and effort with the Ministry of Health, palliative care still reaches fewer than 10% of those in need.

Research

In 2014, a consortium of palliative care researchers met to define the field's research needs. Two of many identified were patient outcomes and the impact of palliative care as perceived by patients and caregivers.¹¹ It is important that this research is sensitive to and reflects local culture. A 2003 study prioritized identification of relevant needs and determination of outcomes for care at the community level as one of several topics to guide research objectives and resource allocation in Subsaharan Africa.⁶ It is particularly important in resource-limited settings that care priorities are regionally determined for optimization of resources in delivering culturally sensitive care.^11–13

Past research at HAU has included qualitative studies of patient needs, caregiver needs, community systems strengthening, and characterization of the experience of life-limiting illness.^10,14–17 Other literature exists validating outcome tools developed in other countries, such as the FACIT-PAL and MVQLI.^16,18–23

This study

This study aimed to measure palliative care priorities among patients, their caregivers, and the healthcare providers at HAU. We hypothesized that patients enrolled at HAU have unique care preferences that might differ from others involved in their care, and possibly from care models based elsewhere. We tested this hypothesis using a tool designed for assessing end-of-life care preferences at a VA hospital in the United States, modified by several researchers with permission at Northwestern University and at HAU.²⁴

Methods

Study design

To measure care preferences at HAU, a cross-sectional Likert scale survey was administered to patients with advanced disease receiving palliative care, their primary caregivers, physicians, nurses, and other healthcare providers at HAU. This survey asked participants to rate 31 end-of-life care statements on a 5-point scale: strongly agree, agree, neutral, disagree, and strongly disagree. Responses were assessed for agreement among groups and variation between groups.

Setting

The survey was confined to patients and caregivers at the HAU Kampala location, where the major languages spoken are Luganda and English, because of the great variety of languages spoken outside of this region. Healthcare providers were interviewed at all three HAU sites because they often move between sites and all are fluent in both languages. At all three locations, patients are seen at home, an onsite clinic, and various outreach programs, including a prison and refugee camp.

Subject selection

Patients were eligible if diagnosed with life-limiting illness and referred to HAU for palliative care regardless of continuation of life-sustaining treatment.

Caregivers were considered eligible if they were the primary person helping an eligible patient at home, regardless of family status, although most were family members. Caregivers and patients were not matched.

Healthcare providers at HAU who had direct patient encounters on a regular basis and formed part of a patient's regular care team were considered eligible for this study, including physicians, nurses, social workers, and pharmacy staff. Providers who assisted in administration of the survey were excluded as study subjects.

Subjects were excluded from the study if they were under 18, lacked decision-making capacity, or did not wish to participate in the study. Eligible patients were recruited at random regardless of demographic factors, but were required to speak English or Luganda.

Survey design

A survey, previously validated for use in the United States, was obtained with permission of its author to be modified for the Ugandan setting.²⁴ The survey began as 44 Likert scale statements regarding the subject's last month of life with associated demographic information. It was modified by researchers and physicians in palliative care and global health at HAU and Northwestern to 31 Likert scale items. Items such as “be with one's pets,” “receive care from one's own personal doctor,” and “have a chance to talk about the meaning of death” were removed for reasons such as irrelevance for the patient population and feasibility in translation and delivery.

The tense of the survey was changed to be read aloud to address illiteracy. For example, the first Likert scale item was changed from “Be free of pain” to “The patient is free of pain.” Surveys were translated by a private translation service into Luganda and confirmed independently by the medical director and two of the nursing staff at HAU.

At the request of HAU, a comments section was included to gather qualitative data concerning patient preference for dying at home, a topic studied previously, as well as any other qualitative data.¹⁴ Other topics included symptom management, spiritual care, planning, provider preferences, and day to day activities, among others.

The survey and consent were piloted with four subjects onsite: an English-speaking patient and caregiver, and a Luganda-speaking patient and caregiver. Pilot subjects were asked if any questions were confusing or distressing, as death is not often discussed in many Ugandan cultures. Pilot subjects were not included in the final study sample.

One clinical officer, one nurse, and two social work interns at HAU went through training in consent and delivery of the survey and, with one Northwestern medical student, delivered the survey. These providers were excluded as study subjects. Each was observed in the verbal delivery of one to two surveys to ensure consistency in delivery.

Data collection

In June and July of 2015, 126 surveys were gathered during routine health visits. Subjects were recruited at random and brought to a private area (an empty clinic room or a private area of the home) and consent and assurance of privacy were discussed. Subjects were also assured that they could opt out of or skip questions as they wished.

Consent and surveys were read aloud to subjects due to high rates of illiteracy, and responses were recorded by the research staff. Both English and Luganda surveys and consents were available and chosen based on subject preference. Comments were taken at the end of the survey. All comments were transcribed in English by research staff.

Analysis

To assess consensus among the three groups, patients, caregivers, and healthcare providers, a Kruskal–Wallis test of independence was used for each of the 31 items. If a significant variance in the distribution of responses was detected, responses were collapsed into agreement, neutrality, or disagreement and frequency data for those responses were contrasted among the three groups.

Finally, based on mean Likert values for each question, the top 10 most agreed-upon statements for each group were identified and compared as priorities for that group.

Ethical approval

Ethical approval was obtained from Northwestern University IRB and from the Ugandan National Council for Science and Technology, through the HAU Research and Ethics Committee.

Results

Demographics

One hundred twenty-six subjects were approached, and none declined to participate. Of 126 surveys collected, 4 were excluded for not meeting inclusion criteria. One hundred twenty-two surveys, including 51 caregivers, 46 patients, and 25 healthcare providers were analyzed. Sixty-five surveys were delivered in English and 57 in Luganda. There were 77 female subjects and 39 male subjects with an average age of 41 (Table 1).

Table 1.

Demographics

	Group
	Caregiver (n = 51)	Healthcare provider (n = 25)	Patient (n = 46)	Total
Survey language
English	25	25	15	65
Luganda	26	0	31	57
Gender
Male	13	7	19	39
Female	34	18	25	77
Age
<30	18	8	7	33
30–39	4	11	8	23
40–49	13	3	8	24
50–59	7	3	10	20
60–69	4	0	8	12
>70	0	0	3	3
Highest education
Primary	14	0	24	38
Secondary	14	0	14	28
Tertiary	8	11	2	21
Uni	9	11	2	22
Other	2	3	2	7
Marital status
Married	22	18	15	55
Widowed	1	1	12	14
Divorced or separated	5	0	10	15
Never married	18	6	7	31
Self-reported health status
Excellent	0	7	3	10
Very good	6	12	3	21
Good	21	6	10	37
Fair	13	0	18	31
Poor	0	0	9	9
Patient's diagnosis
Cancer			19
HIV			17
HIV cancer			5
Other			2
Have you been with someone during the last hour of life?
Yes	28	24	37	89
No	18	1	2	21
Religious affiliation
Declined	5	0	2	7
Anglican	3	3	4	10
Catholic	20	12	10	42
Protestant	18	9	22	49
Muslim	2	1	8	11
Other/None	3	0	0	3

Discordance between groups

There was statistically significant variation between group responses to 12 of the 31 statements, as determined using Kruskal–Wallis test. There was significant difference of opinion regarding relief of pain between patients and their caregivers and providers (p < 0.001) with 100% of providers and 88.3% of caregivers agreeing that pain relief is important, while only about half of patients agreed with this statement. Similar, although less pronounced, differences in group distributions were found for patient awareness (p = 0.008) and freedom from anxiety (p = 0.05).

Regarding planning for the future: that patients have a chance to say goodbye to loved ones (p = 0.001) and have financial problems managed (p = 0.003) was less agreed upon by patients; all groups were divided regarding the planning of funeral arrangements (p = 0.013), but fewer than half of patients agreed that those plans should be made; that patients have a chance to resolve disputes was generally agreed upon by each group, but was significantly less concerning for patients (p = 0.016); that patients know who will care for their children after dying varied significantly (p < 0.001) with only 76% agreement among patients, although 86% and 96% agreement was among caregivers and providers, respectively.

That patients “discuss their emotions about dying” was generally agreed upon by patients (71.8%), not agreed upon by caregivers (56%), and strongly agreed upon by providers (96%), with variation of response p = 0.002. That the patient has family with them, or that patients have someone present with them when they die found least agreement among patients (p < 0.001 and p = 0.02, respectively).

Finally, and very pronounced, was the variation between responses concerning dying at home. Only 25% of patients and 11.7% of caregivers found it important for the patient to die at home. This is in contrast to 72% agreement among healthcare providers at HAU (p < 0.001) (Table 2).

Table 2.

Questions with Statistically Significant Discordance in Response (Shown Are Percentage of “Agreement” for Each Group)

Question		Patients	Caregivers	Healthcare	p
1.	The patient is free of pain	52.2	88.3	100	.000
2.	The patient is aware of what is happening	90.9	84.3	100	.008
3.	The patient is free of anxiety	68.9	88.2	100	.050
6.	The patient has a chance to say goodbye to important people near the end of life	88.9	82	100	.001
7.	The patient has financial problems sorted out	78.2	92.1	92	.003
8.	The patient has funeral arrangements planned	41.3	53	60	.013
13.	The patient has a chance to resolve disputes with family or friends	87	96	100	.016
14.	The patient discusses their emotions about dying	71.8	56	96	.002
18.	The patient has family members with them	82.6	98	100	.000
19.	The patient knows who will care for their children after dying	76.1	86	96	.000
20.	The patient has a person by their side when they die	87	94	100	.020
21.	The patient dies at home	25	11.7	72	.000

Interesting findings among items with concordance between groups

Areas of pronounced agreement >90% between all groups included maintaining cleanliness, dignity, and humor, and finding peace with God and prayer. All groups agreed that a social component of care was important: for patients to be involved in spiritual community and for the patient to spend time with close friends. Furthermore, it was agreed that it is important that the patient sort out financial affairs and resolve disputes, to plan for the care of their children and to name a decision maker. Finally, it was widely agreed upon by all groups that patients have doctors whom they can trust. Lastly, there was a marked de-emphasis on knowing disease prognosis, with only 46.6%, 33.4%, and 40% agreement among patients, caregivers, and providers, respectively.

Most prioritized items for each group

Mean Likert responses were found for each statement and group and ranked numerically. The top response among patients and caregivers was that patients be kept clean. Indeed, the top 4 responses among patients and caregivers were the same, and among the top 10, 8 of the 10 were the same. These were that the patient is kept clean, trusts their doctor, comes to peace with God, prays, maintains dignity, with a spiritual leader, maintains a sense of humor, and shares time with close friends.

Healthcare providers agreed with patients on 5 of their top 10 attributes ranked by agreement of importance. These were that the patient is kept clean, has a chance to say goodbye to important people near the end of life, maintains dignity, is aware of what is happening, and comes to peace with God (Table 3).

Table 3.

How Caregivers and Providers Rank Patients' Top 10

Patient	Caregiver	Healthcare providers
1. The patient is kept clean	1	3
2. The patient trusts their doctor	4	Unranked
3. The patient comes to peace with God	2	10
4. The patient prays	3	Unranked
5. The patient maintains dignity	7	6
6. The patient meets with a spiritual leader	6	Unranked
7. The patient maintains a sense of humor	8	Unranked
8. The patient is aware of what is happening	Unranked	7
9. The patient shares time with close friends	10	Unranked
10. The patient has a chance to say goodbye to important people near the end of life	Unranked	4

Discussion

This study suggests that for many aspects of end-of-life care at HAU, patients, caregivers, and healthcare providers have different ideas about what constitutes quality care.

There was variation in responses regarding symptom management between groups and even between symptoms. Western literature generally shows importance among patients, their families, and care teams that the management of symptoms such as pain, anxiety, and shortness of breath remains top priority.²⁴ This study, on the other hand, found only shortness of breath to be agreed upon as a priority for all groups, with patients themselves describing pain and anxiety as symptoms that are unavoidable.

While many aspects of planning remain important to involved parties (such as the caring of children, or the sorting out of financial affairs), Ugandan patients generally avoid discussions involving death. Our study shows unanimous agreement by patients, family, and providers that funeral planning, for example, be deferred. This varies from Western studies, which show that patients want prognostication.²⁴

Concerning place of death, providers find themselves on the other side from patients and their family, who generally oppose dying at home. Previous results in Uganda show a preference for dying at home among patients, but that is not the case in this study.¹⁴ While dying at home does allow for personalized care and proximity to loved ones and avoids prohibitive costs, such as transportation of the deceased, it is also associated with the stigma of poverty in Uganda. The role these factors play in this study's findings should be the topic of future study.

It is also important to highlight areas of congruence in the wishes of providers, family, and patients at HAU. These included a trustworthy and open care team, a socially connected patient, a spiritually intact patient, and one cared for as a whole person, with attention to dignity and humor. For many aspects of care, meeting with clergy and discussing spirituality, for example, the unanimity was quite striking compared with a similar U.S. study.²⁴

Limitations of this study include small sample size, the use of an unvalidated survey, the small pilot phase, poor literacy, and health literacy among those studied and regional limits of language in Uganda. The small sample size makes multivariate analysis unhelpful in excluding sample characteristics, such as language spoken and level of education in accounting for difference in survey responses. Many of these demographics were also tested with the Kruskal–Wallis test. While some significant differences in response did occur based on demographics, the sample size does not allow us to distinguish whether these characteristics confound the differences in responses between groups. For this reason, this study should be considered exploratory in nature, and a larger sample should be gathered for definitive understanding of response variation in such a heterogeneous population. Although the survey was modified from a survey validated in the U.S., due to modification and use in a new population, this survey cannot be considered validated. The pilot of four individuals (English- and Luganda-speaking patients and caregivers) was designed to ensure questions were relevant and not distressing, although it can hardly be expected that four could represent a population. Poor literacy created the necessity to read surveys aloud, which introduces variability in delivery of surveys, although this was countered with training and some observation by study designers. However, because health literacy is profoundly low in the studied population, surveys could simply not be delivered without individualized explanations. Finally, because over 42 languages are spoken in different regions across Uganda,²⁵ this study is limited in its national generalizability. It primarily reflects the wishes of patients in Kampala, an overwhelmingly Buganda culture. Because the language of Luganda is slow in pace and not medically inclined, there was inherent bias among surveyors to deliver surveys in English, reflected in 65 to 57 English to Luganda surveys delivered, which does not mirror the minority of patients who speak fluent English. For this reason, next steps should include translation of the questionnaire into Lunyoro and Nkole, the respective languages of HAU's branches in Hoima and Mbarara.

Conclusion

From this study, it is evident that HAU patients facing terminal illness have unique care preferences. It is not a great leap to conclude that palliative care programs, in their inception, should study regional patient preferences to determine outcome measures for success, and to allocate limited resources to these outcomes. For HAU, it is clear that spirituality is an important part of care that is well recognized by families and providers. There is also an overwhelming interest from patients and families that patients die in a hospital. It is not clear that dying in the hospital actually improves the end of lives for patients or their families, and it adds certain costs, such as transportation of the body that many families cannot bear. Because these wishes anecdotally stem from social stigma, it would be worthwhile to study this issue further, and it may be reasonable to tackle this issue with education and awareness. Nonetheless, the authors of this study hope that it illustrates the need for regionally specific goals of care, measurements of outcome, and design of programs, especially when resources are slight.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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