Associate Professor of Psychology at Mount Allison University, Sackville, NB
We've got hospice palliative care volunteers, would you like one?

There’s nothing more frustrating to a volunteer coordinator in a community-based program than having a pool of well-trained and motivated hospice palliative care volunteers, but no referrals. Volunteers in community-based programs will go into a hospital, nursing home or – more typically – the dying person’s own home to provide care and support for people with life-limiting illnesses and their families. The issue of lack of referrals and/or late referrals was the topic of a recent study by Claxton-Oldfield and Marrison-Shaw (published online ahead of print in the American Journal of Hospice & Palliative Medicine) (1). Many people who could benefit from the companionship, emotional support, and practical assistance provided by volunteers are not taking advantage of these community-based programs. Claxton-Oldfield and Marrison-Shaw wanted to know why not? Why are referrals to community-based volunteer programs not forthcoming?

 

What was done

In an attempt to answer this question, the authors created the “Perceived Barriers and Enablers to Hospice Palliative Care Referrals Questionnaire” (PBEQ) based on the results of Study 1 - interviews with a physician, home care nurse manager, social worker, and volunteer coordinator - and a review of the mostly American literature on barriers and enablers to accessing hospice services in general. Ten volunteer coordinators in Atlantic Canada responded to the PBEQ and rated the extent to which they perceived 18 items as barriers or obstacles to referrals (e.g., “Patient/family do not want to admit they cannot manage on their own”, “Health care providers put more emphasis on medical care for the terminally ill”). The volunteer coordinators also rated the extent to which they perceived 12 items as enablers or ways of increasing referrals to their program (e.g., “Community presentations about the volunteer program”, “Encouraging health care providers, volunteers, and users of volunteer services to spread the word about the benefits of the program”).

 

What was found

The top 3 greatest perceived barriers were:

  • patient /family have too many people coming in and out of their home; a volunteer is just another body
  • patient/family do not like the words hospice and palliative, because they mean “giving up” or “time to die”
  • patient/family are unaware of how much training (30+ hours) volunteers receive


The top 3 greatest perceived enablers were:

  • encourage healthcare providers to recognize caregiver burnout and the value of utilizing a volunteer
  • encourage healthcare providers, volunteers, and users of volunteer services to spread the word about the benefits of the volunteer program
  • meeting with health care providers on a regular basis to promote the value of the program

 

Implications

We need to do a better job of educating people - the general public and healthcare providers - on the role and preparation (30+ hours of training) of hospice palliative care volunteers and how to access this service (e.g., patients/families can self-refer). We also need to dispel the myth that hospice palliative care is only for patients in the last few weeks of life.

The enabler perceived as having the greatest potential to increase referrals was promoting the fact that volunteers can help relieve caregiver stress and burnout. Most Canadians say they want to die at home (or stay at home for as long as possible). A 2004 Ipsos Reid survey (2) found that it takes Canadians an average of 54 hours per week to care for a dying loved one at home; all the more reason to take advantage of volunteers who are willing to provide a few hours of respite per week for caregivers. We also need to do a better job of ‘talking up the value’ of community-based hospice palliative care volunteer programs (e.g., word of mouth, success story articles in the local newspaper). That old adage “use it or lose” applies here; volunteers will drift away from these programs and the programs will shut their doors if the referrals do not come. It would be comforting to think that nobody was dying in our communities and that is why these programs are being underutilized, but that’s clearly not the case. To hopefully help volunteer coordinators overcome some of the perceived barriers to referrals, the study’s authors created a ‘Tips for Referrals’ sheet.

For a copy of the Tips for Referrals sheet, please contact Dr. Stephen Claxton-Oldfield.



References


1.    Claxton-Oldfield, S., & Marrison-Shaw, H. Perceived Barriers and Enablers to Referrals to Community-Based Hospice Palliative Care Volunteer Programs in Canada. American Journal of Hospice & Palliative Medicine, first published on September 13, 2013 as doi: 10.1177/1049909113504482.

2.    Ipsos Reid Survey (January 2004). Hospice Palliative Care Study: Final Report.