Dr. Antonia Arnaert, Assistant Professor, School of Nursing, McGill University, Montreal

Tele-Palliative Home Care: An Introduction to the Next Potential Wave of At-Home Needed Telecare

Antonia.arnaert@mcgill.ca
Phone: 514-398-5624

Although death and dying are personal matters, palliative care is an important public obligation.¹ Currently, many of the 220,000 Canadians who die each year often lack access to integrated palliative care services.² Despite health care initiatives to increase access to specialized palliative care, it is estimated that in the province of Quebec only 5% to 10% of dying patients have access to palliative care services.³ Patients and their families also wish to remain at home while receiving palliative care, as their own home is experienced as a warm and recognizable place, with a healing atmosphere.

However, one of the barriers to home palliative care is the lack of access to formal home care services.¹ All too frequently, these patients must rely on informal caregiver, in particular family members and volunteers to support them through the end-of-life process.

The delivery of palliative care in rural communities often brings additional challenges with it. Patients and families living in rural areas often lack access to palliative care expertise.⁴ As well, patients living in rural areas may be confronted with a paucity of after hours care as rural palliative care services may not be staffed at adequate levels of service.⁵ In Québec, there is clearly a need to strengthen palliative care in the regions outside the main urban centers. Indeed, the Provincial Policy in the Area of Palliative Care⁶ promotes a comprehensive, coordinated and integrated set of palliative services for all regions, such as 24 hour specialized telephone support. In Quebec, telephone support services are used to meet support needs in rural areas. It is cited as an extremely useful resource for community nurses working in rural areas and for families caring for palliative patients by providing information and decision assistance. Caregivers experienced less depression, despair, and disorganization even though the patient’s condition could become more serious.

However, video-supported interactive telehealth tools, such as the videophone, have an added valued over telephone support. Seeing the person on a distance gives the subjective sensation of being “fully present” at a remote location from one’s own physical location. The sense of “social presence” gives people the feeling of being connected and being together with someone. In Canada, only a few tele-palliative nursing projects used ISDN (Integrated Services Digital Network) video-phones.^7,8 This nursing approach has been used for pain evaluation, psychosocial support of patients and caregivers, and for providing information in relation to the administration of medication.⁹ Particularly in rural settings, the introduction of e-health services can help to improve access to staff, reduce travel costs for providers, reduce unnecessary admissions to hospitals, and provide more timely care in urgent situations.⁴ Palliative patients and their families found that the visual feature of the videophone enhanced the care they received.⁷ Hospice nurses found that the videophone enhanced care by giving providers, patients and family members with a helpful medium of communication.

However, there is need not only for improved access to nursing expertise in the area of palliative care, but also for greater use of a “whole-person care” approach. Whole-person care involves the total care of a palliative patient, through the control of pain and symptoms, and attention to psychological, social and spiritual problems. How can we help through e-health patients and lay caregivers, who experiences clear burdens, move out of a cycle of suffering through a process of healing, which begins from within and ultimately lead to inner peace?

Videophone nursing care is from my experiences in Belgium ideally suited for frail elderly. More specifically in this study significant improvements of overall functioning, levels of social activity, memory function, positive self-perception, reduction of feelings of melancholy, social and emotional loneliness, and the maintenance of a network of friends could be identified for groups of frail elderly those who are widowed, live alone with little housing comfort, who are dissatisfied with their life, lonely and isolated, and who have physical and mental general health problems.⁹

Recently, the provincial government divided the province of Quebec into four geographic regions, or Réseau Universitaire Intégré de Santé (RUIS).Each RUIS has the responsibility to coordinate tertiary health care services, teaching and research provided by each university’s faculty of medicine and its associated teaching hospitals. Currently with the McGill RUIS Tele-Oncology Table (http://www.med.mcgill.ca/ruis/) we develop, in collaboration with di fferent key stakeholders in different regions, a tele-palliative care program to deliver whole-person care to patients and their families living in remote and rural areas. Also a program will be developed to give training and support to community nurses about whole-person palliative care using different e-learning tools.

1. Wilson, D. (2003). Final Report. Integration of end-of-life care: A Health Canada synthesis research project. University of Alberta (pp. 49).

2. Wilson, D.M., Northcott, H.C., Truman, C.D., Smith, S.L., Anderson, M.C., Fainsinger, R.L., & Stingl, M.J. (2001). Location of death in Canada: A comparison of 20 th-century hospital and non-hospital locations of death and corresponding population trends. Evaluation & the Health Professions, 24(4):385-403.

3. Lambert, P. & Lecomte, M. (2000). Le citoyen: une personne du début ă la fin. Quebec, Que: Ministère de la santé et des services sociaux.

4. Whitten, P., Doolittle, G., Mackert, M., & Rush, T. (2003). Telehospice: end-of-life care over the lines. Nursing Management, 34(11):36-39.

5. Wilkes, L., Mohan, S., White, K., & Smith, H. (2004). Evaluation of an after hours telephone support service for rural palliative care patients and their families: a pilot study. The Australian journal of rural health,12:95-98.

6. Ministère de la Santé et des Services Sociaux (2004). Politique en Soins Palliatifs de Fin de Vie (pp. 98).

7. Miyazaki, M., Stuart, M., Liu, L., & Stewart, M. (2003). Use of ISDN video-phones for clients receiving palliative and antenatal home care. Journal of Telemedicine and Telecare, 9(2):72-77.

8. Herbert, M.A., Jansen, J.J., Brant, R., Hailey, D., & van der Pol, M. (2005). Effectiveness of video-visits in palliative home care: preliminary findings of an RCT in the community. Proceedings (484) Telehealth 2005.

9. Doolittle, G., Yaezel, A., Otto, F., & Clemens, C. (1998). Hospice care using home-based telemedicine systems. Journal of Telemedicine and Telecare, 4:58-59.

10. Arnaert, A., & Delesie, L. (2001). Telenursing for the elderly. The case for care via video-telephony. Journal of Telemedicine and Telecare,7:311-316.

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