Capturing Caregiver Experiences

The optimal, and most compelling, way to track the quality of our palliative care programs is to ask those who have been impacted by them — for better and for worse. But with the ever-growing number of caregivers in our communities — and the lack of resources, both human and financial — one-on-one conversations and interviews are simply not feasible.

Through a rigorous process we developed, and tested, a survey which was specially designed to allow primary caregivers to share their, and their loved one’s, end-of-life care experiences.

Survey Development

The CaregiverVoice survey was developed based on an extensive literature review of palliative care performance measures and two quality experience instruments: FAMCARE to measure satisfaction and VOICES to measure the care experience.

The questions cover a range of different providers, settings and services used — including home, hospital, residential hospice, cancer centre, emergency department use, symptom management, quality of care from doctors and nurses, attention paid to spiritual needs, clarity of communication and decision-making around appropriateness of place of death.

Most questions are framed in the last three months of life, although one section asks specifically about the last week and the circumstances surrounding death.

Initial Results

The pilot study was successful and informative. Data was collected, with the help of Community Care Access Centres (CCACs) and their service provider organizations, from more than 300 bereaved caregivers across Ontario. All the patients received home care in the final months of life, as well as services from other facilities such as a hospital, hospice or long term care.

Most caregivers reported a good experience, but did identify some specific problems and suggestions for improvement:

  • about 70% of respondents felt all providers, and care, were excellent
  • about 20% felt care was good, but there were some issues
  • about 10% reported major problems
  • 20% indicated urgent, after-hours home care services were fair or poor
  • about 70% reported the patient pain was relieved completely, all or some of the time — or there was no pain at all
  • 6% reported that pain management was poor in the last week of life

The four most frequently-mentioned complaints (by 11% to 6% of respondents) were:

  • caregiver needed more help and/or services in order to support patient
  • organization of medication/pain control was lacking and there was no symptom management kit
  • health service provider was insensitive, lacked empathy, was condescending or unpleasant
  • health service provider had no palliative care training/experience

What caregivers told us they want:

  • to have more home care support so patients cared for at home
  • to clarify understanding between the caregiver, patient and providers about what is expected during a visit
  • to have the ability to replace the Care Coordinators, Nurses or PSWs upon request
  • to have consistency of providers caring for the patient — particularly with PSWs
  • to have experienced palliative care providers supporting the patient at end-of-life — without the need to change providers in the last few days of life, unless requested
  • to be better educated as to what to expect as patient declines
  • to respect patient/caregiver sensitivities regarding end-of-life discussions — whether or not they want to be told the patient is dying, whether or not they are comfortable hearing the words “death”, “hospice” or “palliative care”, etc.
  • to have the ability to bypass the emergency department and be admitted directly to a palliative care unit or hospice when home care is no longer possible
  • to be included in the communication loop between providers and the patient, particularly if the patient is not mentally competent
  • to have better communication between providers to avoid misunderstandings and/or delays in accessessing needed services

Get Involved

Regardless of whether you’re a provider, an administrator, a stakeholder or even a caregiver you can get started today. In order to minimize both mailing and data entry costs and maximize the speed and efficiency of delivery and participation the CaregiverVoice survey can be administered online.