What’s in this section:
Managing difficult problems
Difficulties can arise when a patient’s symptoms do not respond to usual management, or when distress or psychosocial issues overwhelm both patient and doctor. A palliative care approach acknowledges the connections between the patient’s physical, psychological and social situation. Unaddressed problems in any of these domains can present with escalation of other problems.
A complete assessment, such as the patient self-administered National Comprehensive Cancer Network distress thermometer, will include all domains and may make it clear where the barriers to improving care lie. Due to their longer term involvement with patients, general practitioners (GPs) are often extremely well placed to make these assessments.
Important factors which frequently contribute to difficulties include:
- The possibility of unidentified depression, panic or anxiety or significant psychiatric morbidity, which may contribute to worsening of other problems
- The presence of complex pain
- Coping styles (eg, anger, manipulative behaviour etc) and / or difficult family dynamics which may contribute to distress
- Unresolved grief or life issues, religious or existential concerns
- Patients who are extremely socially or economically marginalised
- Young patients, patients with young children, or patients with very stigmatising or traumatic symptoms
- Patients with whom the GP identifies in some way (positively or negatively).
Caring for such patients is extremely demanding, and wherever possible a number of practitioners should be involved to share the load. These complex patients are the group who derive most benefit from a holistic, multidisciplinary approach.
Appropriate referrals could include:
- Pain management services to review all the possible modalities and if needed manage interventions for complex pain (eg, epidural or intrathecal analgesia or nerve blocks etc.)
- Palliative care service, to review complex symptoms and assist with co-ordinating care; also to debrief if GP wishes
- Psychiatric review
- Family counselling
- Respite admissions, to improve symptom control, provide further assessment, or to give caregivers a break
- Community social worker involvement to assist with practical, legal and financial matters, and to assist with mobilising psychosocial supports
- Spiritual advisers from the person’s faith community
- Complementary therapies, which are offered by many palliative care services, may provide a mechanism for offering support in a less clinical environment
- Early referral to bereavement services if family members are felt to be at high risk.
Even for patients whose distress may relate to life-long patterns of behaviour or other intractable issues, it may be that the most valuable thing is to know that their doctor and other health care providers will not give up trying to improve their distress, and that they will not be abandoned in the last part of their life.
Self-care issues and burnout
There may be great satisfaction for GPs in providing good end-of-life care for patients known through many years. However clinicians may be greatly affected by this experience. They may have:
- Difficulty shifting from curative mode, where death = clinical failure, to a palliative and supportive role where death is an inevitable and appropriate outcome
- Guilt, if perceiving that a diagnosis was missed or delayed
- Trauma and helplessness if unable to completely relieve difficult symptoms or intense distress in the patient or their family
- Some anxiety from confronting their own mortality issues.
Resilience is the capacity to adapt under stress, and the ability to thrive and find satisfaction from producing good outcomes in difficult situations. The resilient palliative care provider is able to monitor their own levels of distress and identify and deal with potential problems in their practice. There is an evolving literature on resilience and how to promote qualities that also support professional survival and growth.
Burnout is a syndrome of emotional exhaustion, depersonalisation, and reduced accomplishment which occurs in health workers and others who work in human services. Burnout occurs when the stressors exceed the person’s ability to cope.
Some markers of burnout are:
- Negative or cynical attitudes about patients and their needs
- Negative attitudes to work, the workplace, and / or colleagues
- Pervasive feelings of dissatisfaction and unhappiness related to work
- Physical and emotional symptoms (fatigue, boredom, irritability, headaches, weight loss, and so on) which can be associated with absenteeism.
The impact of burnout on the health care worker, on the quality of the care they provide, on their workplace and colleagues, and on their family and friends, is potentially very significant. Burnout is a significant cause of psychiatric morbidity and of loss of health care providers.
Debriefing for GPs
- Doctors can have complex feelings about the loss of a patient, including guilt, sadness, and relief. This may relate to the intensity or duration of the relationship GPs establish with particular patients, or if there are aspects of a patient’s situation that the GP identifies with personally. Sometimes these feelings seem 'unprofessional.' For GPs at risk of burnout due to work difficulties, the feelings may be overwhelming.
- Doctors may sometimes care for a friend or family member. In small communities, patients are often friends, and relationships can be close. This can make end-of-life care very challenging for the doctor involved, and may affect the quality of clinical decision-making. In this situation making contact with a palliative care service to provide review and advice, and to support clinical and prescribing decisions, is very wise - professionally, emotionally, and medico-legally.
- Caring for dying patients demands more than good clinical skills. It exposes the complicated human aspects of our relationships with our patients - what they hope for from us and what we hope to do for them … but cannot always. It spotlights the intensities of families and friendships, and reminds us all of our ultimate human fate. It can be inspiring, or arduous, or depressing.
- Many doctors struggle with the experience of feeling clinically powerless to change the situation of the dying person or their caregivers, or fear that the outcome was in some way unacceptable. Reflective practices, case discussions or journaling - allow specific concerns to be addressed. A post-death discussion with other members of the treating team may give a helpful perspective, including, for instance, nurses who were present around the time of death.
GPs, especially if they are feeling distressed, may wish to consider formally debriefing in this situation - either with a mentor or trusted colleague, a palliative care practitioner, or a counsellor. The AMA Doctors’ Health Database provides a state-by-state listing of a range of support services for medical practitioners.
Support, guidance and feedback about specific clinical situations can be offered by palliative care services, as part of their consultative role. The ability to seek such support is a mark of well developed professional values, a part of effective self-care, and contributes to long term professional survival.
Finding out more
Related CareSearch pages
Depression
Anxiety
Self Care
This page was created on 26 March 2007 and is due for review in March 2009