Palliative Care via Telemedicine: A Qualitative Study of Caregiver and Provider Perceptions

Abstract

Background:

Telemedicine has been proposed as a means to improve access to palliative care. There is limited information about how health care workers feel about providing this kind of care and how families feel about receiving it.

Objective:

This study assesses provider and caregiver perceptions of the safety and efficacy of the Distance Support Program (DSP) of a home-based palliative care provider in Beirut, Lebanon.

Design:

Interviews were conducted with 8 physicians and nurses who provided that care through the DSP as well as 49 caregivers of patients who received care between January 2015 and December 2017. Interviews were analyzed thematically.

Results:

Although they would have preferred having access to home visits, caregivers reported that they valued the information, guidance, and emotional support they received through the DSP and they appreciated having telephone access to providers. Health providers reported the DSP was more efficient than home visits. They felt it was safest when delivered by an experienced provider, they had access to a reliable caregiver, and the patient was assessed at least once. They felt it was important to communicate clear expectations to patients and caregivers when delivering care by telephone.

Conclusions:

Telemedicine can be a useful tool to provide palliative care services in settings where they would otherwise not be available.

Introduction

Palliative care aims to improve quality of life and relieve suffering by managing symptoms and addressing psychosocial and spiritual distress associated with serious illness.¹ The benefits of palliative care to patients, their caregivers, and the health system have been well established.^2–5 This has resulted in calls for the integration of palliative care into health systems at the World Health Assembly in 2014 and more recently at the Global Conference on Primary Health Care in Astana.⁶

Access to palliative care service remains limited especially in low- and middle-income countries and some remote areas in high-income countries.^7,8 Telemedicine has been developed to increase access to palliative care services in different settings with an overall positive impact on satisfaction and patient perceived quality of life as well as a reduction in hospital utilization and cost of care.⁹ Programs vary in technology, structure, and process.¹⁰ Most involve scheduled visits through telephone or video conferencing with a nurse.

Lebanon is a middle-income country in the Eastern Mediterranean with a health system dominated by the private sector. Although some basic medical services are available in small villages and remote areas, specialized medical services are only available in the larger cities. Balsam, the Lebanese Center for Palliative Care, is a nongovernmental organization that has been providing home-based palliative care in Beirut since 2009. Balsam launched a Distance Support Program (DSP) in 2015 to meet the needs of patients residing outside its geographic reach. Patients enrolled in the program are linked to a physician or nurse provider who becomes their primary provider. Patients may have one face-to-face encounter with their health provider around the time of enrollment if feasible. Once enrolled in the program, patients and caregivers have telephone access to their provider 24/7 in case of questions or emergencies. Physicians and nurses plan the frequency of provider-initiated contact with patients based on acuity and need and in collaboration with the interdisciplinary team. Contact is primarily by telephone but may include messaging or videophone, and frequency of communication is adjusted based on patient needs. This study aimed to assess caregiver and provider perceptions of Balsam's DSP.

Methods

Data were extracted from the Balsam database on patients who received services through the DSP between January 2015 and December 2017. Information included patient age, diagnosis, date of admission, date of death, location of residence, and primary caregiver contact information. Caregivers were invited to participate in the study by a Balsam staff member. Caregivers who agreed to participate were contacted by telephone by interviewers from a university hospital who were not associated with the Balsam team (R.S. or A.G.). Semistructured interviews were conducted by telephone by one interviewer. After obtaining verbal consent, interviewees were asked some basic demographic information followed by open-ended questions about the services they received. Interviewees were also asked to rate services received using a 3-point Likert scale. Semistructured interviews were also conducted with all health care providers who had contributed to the DSP during the study period. All interviews were conducted by one interviewer (A.G.).

Interviews were recorded and transcribed. Transcripts were analyzed using content analysis.¹¹ Interviews were coded manually by two of the study authors and cross-checked by a third. Themes were reviewed by all authors to resolve any discrepancies in interpretation. Quantitative data were entered and analyzed using Microsoft Excel.

The study was approved by the Institutional Review Board (IRB) at the American University of Beirut (AUB).

Results

Caregivers

Balsam provided care to 49 DSP patients during the study period and 31 (63%) family caregivers participated in this study. Eight caregivers could not be reached and 10 refused to participate. Most nonparticipants did not give a reason for refusal (n = 7). Two caregivers stated they were still grieving and were not interested in being interviewed. One caregiver stated that they did not recall receiving any services.

Overall, caregivers appreciated the support provided through the DSP (Table 1).

Table 1.

Characteristics of Patient and Caregiver and Service Evaluation

Patient age (years)	Diagnosis	Distance from Beirut (km)	Caregiver age (years)	Relationship to patient	Caregiver education	Duration/length of services	No. of visits	Service evaluation
96	Congestive heart failure	15	63	Son	University	37 days	Multiple	Exceeded expectations
60	Lung cancer	15	39	Daughter	High school	14 days	None	As expected
52	Lymphoma	15	22	Son	University	44 days	Twice	As expected
13	Rhabdomyosarcoma	60	43	Father	Elementary	18 days	None	Exceeded expectations
78	Brain tumor	15	86	Husband	Elementary	14 days	One	No answer
77	Lung cancer	20	45	Son	University	13 days	Multiple	As expected
72	Pancreatic cancer	20	47	Daughter	University	13 months and still alive	None	Exceeded expectations
48	Colorectal cancer	60	42	Wife	High school	14 months and still alive	None	No answer
73	Lung cancer	15	36	Daughter	University	15 days	None	Exceeded expectations
19	Lymphoma	85	46	Mother	Elementary	3 days	None	Below expectations
74	Chordoma cancer	15	52	Daughter	University	3 days	None	Exceeded expectations
58	Lung cancer	15	36	Son	University	25 days	2–3 visits	As expected
63	Multisystem atrophy	20	60	Wife	High school	19 months and still alive	None	Exceeded expectations
80	Parkinson's disease	75	58	Son	University	2 years	One	Exceeded expectations
75	Gastric cancer	20	38	Son	University	18 days	Multiple	Exceeded expectations
68	Lung cancer	20	42	Son	University	84 days	One	No answer
84	Bladder cancer	45	53	Daughter	University	18 days	None	Exceeds expectations
74	Lung cancer	25	48	Daughter	University	12 days	One	As expected
91	Dementia	80	60	Son	University	40 days	None	As expected
60	Bladder cancer	85	35	Son	High school	11 months	None	No answer
75	Brain tumor	20	44	Daughter	University	50 days	Multiple	Exceeded expectations
68	Hepatocellular carcinoma	20	49	Daughter	Missing	34 days	1–2 visits	Exceeded expectations
76	Lung cancer	20	48	Daughter	University	1 day	None	As expected
61	Pancreatic cancer	15	58	Brother	University	39 days	Multiple	Exceeded expectation
81	Colon cancer	15	47	Niece	University	3 months	Twice	No answer
58	Renal cancer	40	31	Daughter	University	20 days	Twice	No answer
58	Colon cancer	40	28	Son	University	7 days	None	As expected
58	Multiple sclerosis	15	25	Daughter	University	19 months and still alive	1–3 visits	Exceeded expectation
76	Dementia	10	55	Son	High school	21 days	6 visits	As expected
69	Brain tumor	12	78	Husband	High school	5 months	1–2 visits per week	Exceeded expectation
73	Lung cancer	15	40	Daughter	University	4 months	1–2 visits per week	Exceeded expectation

The main form of support cited was information and guidance on what to expect and instructions on managing symptoms.

“I was worried and fearful that she would suffocate in front of me and I wouldn't know what to do. I asked the doctor if my mother would suffocate. She said no… this made me feel better.”—Son of a 58-year-old patient with lung cancer

“We used to communicate with them over the phone asking them about pain and medications. … She was very good. They made things easier. She guided us.”—Father of a 7-year-old patient with rhabdomyosarcoma

“He had lung cancer. He had severe pain and shortness of breath. They helped us when he had constipation and when he stopped eating.”—Daughter of a 73-year-old patient with lung cancer

Some caregivers valued the emotional support they received over the telephone.

“You feel someone cares about you.”—Father of a 13-year-old boy

“It is so nice that someone who knows is standing by you through this phase.”—Daughter of a 74-year old patient with chordoma

The accessibility of providers was also highly valued.

“You feel that there is support… you know that the moment you need someone there is Balsam. This was great support for us.”—Son of a 77-year-old patient with lung cancer

“Every time I want to speak with her, she is available… there is nothing like it”—Daughter of a 73-year-old patient with lung cancer

Some stated that they would have preferred home visits. They wished Balsam would expand its geographic catchment area and expressed concerns about the safety of receiving care over the telephone without any visits.

“Over the phone is not enough. But for someone who doesn't know at all and finds someone who would support him and guide him, he will find comfort”—Father of a 13-year-old boy

Providers

All providers (five nurses and three physicians) who contributed to the DSP were interviewed. Three had cared for <10 patients, 3 had cared for 10 to 20 patients, and 2 had cared for >20 patients.

All stated that they found the experience to be both challenging and rewarding. Providers reported that families valued and appreciated having easy access to a physician or nurse. However, they struggled with managing patients remotely.

Support through telemedicine is more efficient. Providers reported that the DSP demanded much less of their time but remained a valuable service.

“They do not require much of your time because you're not visiting them. You're able to reach out to a patient and really help despite not being physically present.”

“It's a huge result for a much smaller investment of time and resources.”

“The little interventions we do make a huge difference.”

It is easier and safer to provide support through telemedicine if the patient is seen at least once. Patients who are too far to visit regularly but close enough to visit at least once received a full assessment at home on enrolment. Providers were more comfortable with follow-up by telephone after an in-person assessment.

“It's hard especially when I don't see the patient. When I get a chance to go at least once, it helps. Because then I would have a context and I've examined the patient.”

Level of experience of the health provider is very important in this setting. Most providers felt that support using telemedicine can only be provided safely by health providers who have extensive experience in palliative care. Providers who are new to home-based palliative care would need to develop their skills before taking on the challenge of managing patients by telephone.

“You cannot be a novice and help with distance support. You need to make sure that you are thinking of everything if you are not seeing the patient.”

The primary caregiver plays a much more important role when patients are being supported by telephone. It is always helpful to have a caregiver at home who is reliable and communicates well with the medical team. When the health care provider is unable to conduct a physical assessment, dependence on the caregiver increases significantly. Good communication and reliability become key to providing safe care.

“You need someone in the family that can be dependable. Someone who understands the situation knows how to act, acts upon your instructions, not someone who doesn't know or is afraid.”

“It really comes down to the caregiver… if there is no one you can depend on, it can be one of the biggest frustrations ever.”

Patient and family expectations must be clarified at enrollment. Families enrolled in the DSP often seek this care because they have very challenging circumstances and are struggling to manage. The care that can be provided using telemedicine is limited and this can lead to disappointment if expectations are not made clear.

“When a family expects you to do regular visits and you don't, of course they are disappointed. But when you tell them ‘This is what I can provide’ …then it's accepted.”

Discussion

Although there is a steady increase in the use of communication technology in health, research on the use of telehealth in palliative care remains limited. Studies to date have focused primarily on clinical outcomes such as reductions in symptom scores and health utilization. Few studies have evaluated the perception of caregivers and none have evaluated provider perceptions.

Our findings suggest that a support program using telemedicine for palliative care is valued by caregivers and satisfying to providers. Caregivers appreciate the information, guidance, emotional support, and having easy access to a skilled provider by telephone during a time of high anxiety and uncertainty.

Providers felt comfortable providing care using telemedicine although seeing the patient at least once before initiating follow-up by telephone improved their comfort level. This is in line with findings from other studies that indicate a level of discomfort with providing care without visualizing the patient.⁹

This study captured the opinions of only 63% of caregivers. Those who refused to participate may have had different perceptions that we could not capture.

With the increased need for palliative care and limited numbers of providers, telemedicine could be a useful way to expand access. Health care planners and policy makers should consider instituting a structured telehealth system to provide patients, caregivers, and primary care providers with palliative care in areas where they would not be accessible otherwise. Further studies on process, safety, and impact of telehealth would help inform the scale-up of similar services especially in countries with limited resources.¹²

Conclusion

Telehealth can be a useful tool to provide palliative care services in settings where they would otherwise not be available.

Footnotes

Acknowledgments

The authors thank Jihad Makhoul at the American University of Beirut Faculty of Health Sciences for her input on study design and Lara Traeger at Massachusetts General Hospital for her valuable feedback on the article.

Funding Information

The authors received no financial support for the research, authorship, or publication of this article.

Author Disclosure Statement

No competing financial interests exist.

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