Author
  • Linda J Kristjanson1
Organisation
  • Unknown1
Year

2005

Excerpt
EXECUTIVE SUMMARY

Introduction and Objectives

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. To date, there are no comprehensive studies that have explored the issues of palliative care clients living alone from the perspectives of clients and health professionals.

The project aimed to provide directions for the development of support structures in palliative care, more specifically directed toward the needs of those living alone with no caregiver, thus informing service planning for a growing population. Therefore the specific objectives were to identify:
  • the needs of palliative care clients living alone, exploring the different needs for rural, remote and metropolitan settings
  • how palliative care clients living alone are currently supported (by home-based palliative care services and other community services provided by State and Territory Governments)
  • the issues, barriers and gaps in providing palliative care services to clients who live alone


Methodology

The project methodology consisted of three stages:

  1. Literature review
  2. Analysis of services’ records: A retrospective analysis of available data in three home-based palliative care services in three Australian states (Silver Chain Hospice Care Service, SCHCS, in Western Australia, Royal District Nursing Service in South Australia and Blue Care in Queensland) was undertaken to characterise the scope and features of the issues within the Australian palliative home care context.
  3. Investigation of Needs, Care Services and Care Issues. This was achieved by:
    - In-depth qualitative telephone interviews with key health professionals in palliative care services in WA, SA and QLD to describe their perceptions of care issues related to services for people living at home alone (n=9, with 3 from each state).
    - Face-to-face qualitative interviews with clients from both metropolitan and rural settings, to capture their personal experiences of managing at home alone. Clients were recruited from the records of clients receiving care from SCHCS and Silver Chain Nursing Association in WA (Total 11).
    - Postal survey to a sample of health professionals from metropolitan and rural areas in the three states to elicit a broader, more representative assessment of key issues related to provision of palliative care for people living at home alone without a caregiver. Names of health professionals were put forward by reference group members (Total 90).


Findings

A total of 721 client records, from the three participating home-based palliative care services were identified for a period of 15 months and analysed. Clients living alone with no caregiver and receiving palliative care services made up 7% to 12% of total clients receiving palliative care services in the three participating services. The analysis of services’ records of clients living alone with no caregiver and receiving palliative care services revealed the following profile: 40-45% were male, 40% were widowed and the mean age at death was approximately 75 years. The proportion of clients of non-English speaking background varied between 6% and 18%, depending on the service/state. Only one Aboriginal client was identified. The three most frequent categories of diagnosis were gastro-intestinal cancer (mainly colorectal), respiratory cancer (mainly lung), and genitourinary cancer (mainly prostate). These cancers are typical of the most commonly diagnosed cancers in the Australian population.

The analysis of services’ records confirmed previous reports; that people living alone with a terminal illness have more hospital admissions and are less likely to die at home than those who have a caregiver. Also palliative care clients living at home alone are less likely to have home deaths and more likely to have hospital admissions if they live in rural areas. The group with a caregiver appears to have required twice as many visits and slightly more hours of service than the group with no caregiver. It could be that caregivers more actively requested support, resulting in more visits to the group with caregivers. However, the time spent per visit (caregiver group) was shorter, 0.3 hr compared to 0.5 hr per visit to the group with no caregivers. Also, there would be an anticipated increase in visits and hours to care for someone who dies at home, as would be the case for those with a caregiver.

In terms of support services provided, clients with no caregiver needed considerably more assistance with hygiene, more home help, and management of their care required more liaisons with other health professionals. Clients with a caregiver required more equipment, more oxygen and more counselling. More people with caregivers tended to be at home towards the end stage of their illness, possibly necessitating greater needs for oxygen for the client and more equipment to help caregivers provide support for lifting and other daily living tasks. Most of the equipment is usually provided for safety reasons to assist the paid and unpaid caregivers; therefore, individuals without a caregiver would not require the same equipment.

Rural clients have significantly shorter lengths of stay in the service than metropolitan clients with fewer visits and fewer hours of service/client received. This may be a reflection of the fact that the place of care in rural settings may more often be the hospital or hospice and transfer to these care settings may be required because community support services and nursing staff are stretched in rural areas. If regular visits are required to clients, the challenges posed by distance may make regular follow up more difficult. Therefore, the less frequent and fewer visits to rural clients may in part, be a consequence of the fact that more rural clients die in hospital. It is worth noting that the two areas in rural WA involved in this study are not representative of rural areas in other parts of Australia. In general, heterogeneity in rural communities needs to be acknowledged and therefore characteristics of services would be different. Differences in types of support between the three services were related to the different structure of the three organisations.

Four main themes emerged from the interviews with health professionals in WA, SA and QLD: Care Challenges, Differences in Care Provision, Appropriate Approaches to Care, and Essentials for an Effective Service. These were consistently reported as the major concerns associated with palliative care service delivery to people with a terminal illness living at home alone. Health professionals expressed a respect for the autonomy and independence of the clients, yet felt pressured to ensure that safe and attentive care was possible.

The seven key care challenges identified by health professionals were:

  • complying with the wishes of individuals to remain at home,
  • symptom control,
  • an inability to provide a full 24 hour palliative care service,
  • the effect of client isolation,
  • the appropriateness of meals provided by the traditional “meals-on-wheels” service,
  • client safety, and
  • the impact on support of a transient population in rural areas.

A number of essential issues related to effective service provision for people, who live at home alone, were identified by health professionals:

  • The provision of a “night sitting service”.
  • The provision of an after-hours support service (e.g. telephone support).
  • The provision of a 24-hour palliative care service.
  • Coordinated housekeeping services. (e.g. cooking, arranging for tradesmen, cleaning, gardening, laundry etc.)
  • A single coordinator to allocate and coordinate appropriate additional (non-nursing) support services.
  • A pool of volunteer and paid caregivers to assist in maintaining the continuity of care for individuals living alone.
  • Financial support packages to provide in-house respite specifically for those living alone. (e.g. Similar to the Red Cross Crisis Care provided to clients’ caregivers)
  • Funded palliative care packages similar to funded community care provided under Community Aged Care Packages and home community care.
  • Funded or subsidised access to alert link systems (ie. an emergency call system) for all palliative care clients living alone.
  • Access to a visiting social work service to ensure that all palliative care clients living alone receive all appropriate allowances, subsidies, & remunerations.
  • Expanded human and capital resources to increase the frequency of visits to palliative care clients living alone.
  • Access to transport services to facilitate travel to and from the general practitioner.
  • Increase funding so that palliative care services cover clients with a non-cancer diagnosis.


The results from the client interviews regarding the needs of palliative care for individuals living alone were summarised into five broad categories of support:

  • Support Needs: maintaining independence, the need for home help, advice about medication and financial support.
  • Physical Needs: the type and amount of support required to carry out the basic activities of daily living were dictated by the gradual erosion of the participants’ ability to care for themselves due to fatigue, declining mobility, or pain.
  • Social Needs: the need for support to get out and about, protection from isolation and the importance of pride in their usual social roles.
  • Emotional Needs: the emotional importance of being, and remaining, independent and maintaining capacity for autonomy.
  • Remaining at Home - A matter of choice and of dignity.


Findings from this phase of the study provided useful insights into many of the motivations, beliefs and wishes of individuals who endeavour to cope on their own with minimal assistance. The needs of these individuals are practical, emotional, physical and existential. At the heart of these concerns is a strong need to be independent and maintain a sense of dignity at end of life.

It is worth noting that the eleven individuals that we were able to interview from the initial larger pool of 21 were not at the end-stage of their disease (the median length of time since diagnosis was two years, and the median time they had been receiving community based palliative care was three months). Therefore, they were still independent and able to care for themselves, although unable to do active work, as confirmed by the reasonably high scores from Barthel and Karnofsky scales. None of the participants required help with the basic activities of daily living. However, they raised concerns about their ability to cope should their physical functioning deteriorates. Independence was highly valued and changes that triggered threats to this independence were stressful.

The response rate of health professionals to the postal survey was 52%, with half of the respondents from rural areas. More than sixty percent of health professionals, who responded to the postal survey, spent at least 15-30 minutes of additional time per visit providing the following support for clients without a caregiver: symptom control, medications, mobility, transport and social support. Also, at least a quarter of respondents spent one hour or more of additional time per visit on activities of daily living (43%), symptom control, housekeeping and emotional support (25%). Rural respondents tended to spend more time per visit on all support areas. On a scale of 1 (very unsatisfied) to 10 (very satisfied), the overall satisfaction median for the level of care they were able to provide for this group of clients was 5.0, for both rural and metropolitan respondents. Reasons put forward for this average satisfaction ranking were mainly due to limited resources and funding, such as levels of staffing, lack of availability of a social worker, housekeeping support, lack of volunteers and concerns over safety.


Conclusion and recommendations
Community and home-based palliative care services are facing increasing challenges in service provision due to an ageing population, an increase in the number of people living alone who require care, a decrease in the availability of family caregivers and a preference to be cared for and die at home. This scoping study has explored the issues of palliative care patients living alone, from a client and service provider perspective, and has provided evidence-based information to assist with service planning for this growing population. The findings from the analysis of services’ records and the comments of clients and health professionals demonstrate that there are aspects of being on one’s own with cancer and living at home that require a specialised approach and support. Adequate services to this particular group will lead to more care being able to be delivered at home, a better quality of life, a capacity to die at home and a reduction in hospitalisations and other health care costs.
 
1) It is recommended that State and Territories Health Departments through the Palliative Care Inter-governmental Forum (PCIF) and the Australian Government through the National Palliative Care Program consider the following directions for service provision:

  • The provision of a 24-hr palliative care service, to be tailored to a range of service types and settings for people living home alone, which may include services such as
      o  Provision of a night sitting service
      o  Provision of an after-hours support service 
      o  A pool of volunteers and paid caregivers to support this group of clients
  • Funded palliative care packages for clients living home alone • Financial packages for in-house respite
  • Funded alert link systems

2) It is also recommended that greater awareness raising strategies be considered to ensure palliative care patients are aware of the HACC services they may be eligible for. This could be achieved though an awareness raising strategy with service providers and HACC Officials.

Available at:   http://www.ag.gov.au/cca

http://www.health.gov.au/internet/wcms/publishing.nsf/content/palliativecare-pubs-serv-scope