Australian palliative care providers’ perceptions and experiences of the barriers and facilitators to palliative care provision

Abstract

Objective

People with advanced cancer who may benefit from specialised palliative care (SPC) do not necessarily access such services.

Methods

To obtain a deeper understanding of issues affecting access to SPC, five focus groups were undertaken with nurses (35), physicians (three), allied health professionals (seven) and an academic involved in providing care.

Results

Thematic analysis revealed that palliative care providers consistently view palliative care as a broad holistic approach to care benchmarked on good symptom management. Whilst participants themselves perceived SPC as aiming to maximise the quality of life of the patient and family across all domains of care, they perceived that some health professionals and community members viewed palliative care largely as symptom control and terminal care for access after all disease-modifying treatment has been exhausted. Concern was expressed that such misconceptions were an important barrier to timely SPC. Participants did not nominate a time or particular milestone in the disease process which should prompt referral and suggested that SPC be available at any time where needs are complex and/or are not being met.

Conclusion

Failure to properly recognise and understand the breadth of care provided within the palliative care framework may result in people with advanced cancer and their caregivers not accessing SPC services or accessing them too late to receive maximum benefit. Education may be required to promote the holistic nature of SPC services amongst health professionals and the community and to help realise the potential benefits to patients, families and health professionals resulting from timely access to SPC services.

Appendix 1: Palliative care providers’ focus group guide

Before we begin, there are a couple of definitions that will help so that everyone is talking about the same thing.

• When I talk about advanced cancer, I mean cancer that has regional spread (e.g. regional lymph nodes and/or adjacent organs) or distant metastases (e.g. distant metastatic lymph nodes and/or organs).

• When I talk about specialist palliative care services, I mean services where there are medical, nursing and allied health staff who have undertaken further study in palliative care or have significant experience in the area. It is generally a dedicated service for the provision of coordinated care for the patient and family. Services offered within these units include specialist inpatient care, consultative services (to primary health care workers and general hospital health care workers), home palliative care, day care, respite care, social work and volunteer services, physiotherapy and occupational therapy, psychology and psychiatry, bereavement support, pastoral care and outreach services to surrounding areas. Specialist providers may have formalised consultative and support links with more isolated areas that do not have access to a specialist palliative care unit. Specialist Palliative Care Services provide palliative care as their core specialty.

• Generalist palliative care services are those where clinicians (medical, nursing and allied health) work in areas outside the specialist palliative care service and have professional involvement with people requiring palliative care. This includes the primary health care providers such as the patient’s general practitioner, community nurses and allied health professionals in the community health or hospital setting.

• And by palliative care or palliation, I mean any care that is given to reduce the effects of the progressive disease and to improve the quality of life of the patient, carer, family and friends.

Firstly, could we just go around the group and briefly describe your involvement with advanced cancer patients and perhaps how many patients with advanced cancer you have cared for in the last 12 months.

Can you describe to me what you understand palliative care to be?

For further depth and richness, if needed:

• What is your notion of palliative care?

• What makes good palliative care?

Could you tell me about patients you may have cared for who you think would have benefited from referral to palliative care but were not referred or referral was left until the patient was in crisis? This could have been either generalist palliative care or specialist palliative care services.

For further depth and richness, if needed:

• If example is given—ask what type of PC service the patient would have benefited from and where referral should have come from.

Was there anything special or different about these people who were not referred?

For further depth and richness, if needed:

• Were there particular characteristics of the disease that were different?

• Were there psycho-social characteristics that were different?

• Were there family characteristics that were different?

So, why do you think these people were not referred to palliative care services? What were the barriers to these people being referred? (e.g. doctors perceptions of PC, community ideas of PC, PC not available in their area, patient not being told of prognosis, etc.)

For further depth and richness, if needed:

• Were there reasons relating to the doctors (GP or specialist)? Perhaps these people were receiving palliation from other sources (e.g. GP or one of their specialists)? Or maybe their doctors lacked understanding of what PC is?

• There may have been reasons relating to the patient (e.g. patient thought PC was only terminal care; patient did not want to get addicted to narcotics; patient thought that they were going to be cured, reasons associated with the disease, age, diagnosis).

• (e.g. the family thought that PC was only terminal care; the family did not want patient told of prognosis; family did not want outside “interference,” extent of carer involvement in decision making)

• There may have been institutional reasons. (e.g. patient not willing to forgo active treatment or to sign “not for resuscitation” documents if required by an institution, services not provided because health department focus elsewhere, departmental finances)

• There may have been geographical reasons. (e.g. patient lived just outside PC units’ outreach service boundaries, no services available in patients’ home town)

• Can you talk about what happens if the person is referred to palliative care but for some reason there is a barrier to the actual provision or taking up of that referral?

Let us talk about the decision to refer now. What are the dimensions for referral? When do you think people should be referred? What sorts of things should trigger referral?

For further depth and richness, if needed:

• These things could include disease characteristics, psycho-social characteristics, family characteristics, etc.

• Do these triggers relate to prognostication? How?

• When do you think it is appropriate or the optimal time for a patient and/or carers be referred to generalist or specialist palliative care services? e.g. when it is decided that active care is not going to cure this disease, or when it is discovered that there is a recurrence of the cancer or metastases are discovered or when the patient needs help with pain and symptom management, etc.

What do think of the idea that all patients with advanced cancer be referred to some form of palliative care service?

For further depth and richness, if needed:

• If so, at what point should all patients be referred?

• How would this benefit the patient and family?

Moderator or assistant to summarise or give an overview of ideas presented

Ask:

• Do you think we have missed anything?

• Are there any comments, amendments or corrections or anything that we should add?

Once again, I would like to thank you for your participation in this group and your contribution to the body of knowledge that is being collected to address the issues of referral of patients to palliative care services.