Introduction

Hospice palliative care is “the combination of active and compassionate therapies intended to comfort and support persons and families who are living with, or dying from, a progressive life-limiting illness, or are bereaved” [1]. This includes “whole-person health care that aims to relieve suffering and improve the quality of living and dying” [2]. Underpinned by a wholistic approach, the provision of hospice palliative care not only supports high-quality pain and symptom management but also supports individuals’ physical, psycho-social, and spiritual needs as they prepare for and navigate their life-limiting illness and dying journey. Providing high-quality hospice palliative care also supports the family and friends of the individual receiving palliative care as they cope with grief and loss during the individual’s illness and bereavement [3].

While most individuals express a desire to die at home or in a home-like setting, a substantial number of individuals continue to die in acute care settings [4]. In Canada, although the first interprofessional palliative care services were offered in 1974 [2], access to hospice palliative care remains fragmented and is not accessible to all individuals, especially those who wish to die at home. Of those who are able to access palliative care services in Canada, nearly two thirds received palliative care in an acute care setting in their last month of life [5]. CIHI (2018) reports that fewer than one in six people (15%) received publicly funded home care during their last year of life. This is in great contrast to findings from the United States, where Bhatnagar and Lagnese noted that over 50% of patients who received hospice care were cared for in their own home [5]. Receipt of palliative care [6] has been shown to lead to great financial savings and reductions of acute care health resource expenditures. This includes reductions in the overall length of stay in an acute care setting, the number of ICU admissions, unnecessary diagnostic tests, and inappropriate disease-focused interventions [7]. Hospice palliative care and supports should not be limited to care in the acute care setting, but instead, be made available to support the individual in the setting of their choice.

In rural and northern communities across Canada, there is an even greater gap in the availability of hospice care and support for those at end of life. The absence of equitable access to in-hospice care is amplified by the lack of community services and supports intended to equip those who wish to, die at home. It is well established that this shortfall of resources can negatively impact quality of care and well-being at end of life and increase the number of individuals [7] who may die on their way to the hospital, in the emergency department, or in acute care settings. To support high-quality end-of-life care, persons who are in the terminal stage of their illness and who wish to die at home may require an increasing level of hospice services and supports. Informal family and friend caregivers, who play an integral role in supporting persons to die at home, also require hospice supports, including access to information, education, resources, emotional support, and assistance in providing care.

Therefore, in partnership with leaders from an independent hospice society, an interdisciplinary team co-created an in-home hospice support program in a northern geographically isolated medium-sized city in Western Canada. This partnership includes bereaved family caregivers, community members and volunteers, hospice clinicians and staff, health systems decision-makers, physicians, and academics, who collectively sought to enhance accessibility to hospice care in the community through the provision of person and family-centred psychosocial care, 24-hour crisis support, and enhanced grief and wellness supports in the client’s home. It was determined that this program will offer access to pain and symptom experts, as well as provide access to health care and grief support professionals 24 hours a day, 7 days a week, to better support clients who desire to die in their own home, and their families. The goals of the newly designed “Home Hospice” program include:

• To allow individuals the resources and supports to die comfortably at home if that is the place of their choosing;
• To provide high-quality pain and symptom management and 24-hour crisis support in the individual’s home;
• To educate and support families thereby reducing anxiety and fear about the dying process and preventing/reducing risk of complicated grief; and
• To decrease unplanned visits to the emergency department and death in the acute care setting at end of life.

Following, the objectives of this study will be to evaluate the:

• Feasibility, useability, and functionality of the Home Hospice program to support death in the home;
• Ability of the Home Hospice program to support more palliative patients to die at home;
• Level of support needed for caregivers to address their emotional, educational, and clinical support needs on a 24 hour/7 day a week basis; and
• Impact on number emergency department visits and acute care admissions, after implementation of the Home Hospice program.

Methods and analysis

Sources of data

We will collect secondary de-identified client and caregiver data. Sources for this data will include client referral and intake forms, daily client reports, Home Hospice program monthly reports, closed file reviews, aggregate caregiver post-bereavement survey results, and volunteer journal entries. Further, we will seek to access health systems level aggregate reports from our regional health authority regarding the number of palliative hospital deaths and ER visits. The program is in a geographically isolated city where the majority of deaths currently occur at the University hospital, the largest acute care centre in an area of 600,000km² which serves a population of 300,000 individuals. Examples of data to be collected from the various secondary data sources are described in Table 1.

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Table 1. Secondary data sources and anticipated data collection points.

https://doi.org/10.1371/journal.pone.0306553.t001

Further, qualitative data will be collected from bereaved caregivers at a minimum of three months following the death of the client, and from hospice staff and volunteers engaged in the delivery or design of the Home Hospice program. Interviews will examine motivations for participating in the Home Hospice program, benefits and challenges experienced during the program, and impact of receiving support at home on client care as well as client and caregiver well-being. Interviews will also capture caregiver perspectives on communication with staff and use of communication technologies to enhance care. Finally, opportunity will be provided to discuss suggestions for program adjustments and improvements. Copies of the semi-structured interview script are available at request from the corresponding author.

Knowledge dissemination

We will use an integrated Knowledge Translation/ Knowledge Mobilization (iKTKM) lens wherein we work closely and meaningfully at all stages with our knowledge user and community partners. We will share project-related information through our intersectoral networks to leverage the study’s findings to inform program delivery and practice change within the health system. Where possible, we will delineate findings to describe how sex and gender, in addition to other key demographic characteristics, are impacted by the Home Hospice program. We will generate evidence-based and targeted iKTKM products, including presenting findings at community events and through social media to target participant and community audiences. Further, we will disseminate findings at conferences, workshops, and policy rounds with decision and policy-maker audiences, as well as a publish peer-reviewed articles in high-quality open access journals.

Supporting information