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next of kin's perception of the patient's suffering, of the patient's fading away next of kin's own feelings of insufficiency physical and psychological symptoms, muscle tension, headache, loss of appetite, anxiety and depression. with existential and social aspects, such as feelings of guilt, anger and loneliness.
Powerlessness, Helplessness
A systematic review of informal carers needs in providing home-based end of life care to people with cancer
Bee et al J.Clinical Nursing 2008;18:1379-1393
Carer anxiety
Anxiety related the adverse effects of incorrect caregiving Apprehension about giving medication in case of improper symptom control Carers suffer with ineffective pain management blinded angry sad despairing helpless useless inpatient frustrated
Carers Tasks
Cooking Cleaning Laundry Emotional support Care of other family members Income generation Transport to hospitals Shopping
Manage medication Feeding Dressings Manage a syringe driver Suction Ng feeding Turning and positioning a patient Using an oxygen concentrator Using a hospital bed and ripple mattress Catheter care
Understanding the concept of a good death among bereaved family caregivers of patients with cancer in Singapore Patient- Having a quick death with little suffering family caregiver- to say a final goodbye. Patients prefer not to die in their children's presence the children wished to be present for the final moment. family caregivers
o to give the patients permission to die o to feel recognized for the efforts made o and to have had a fulfilling caregiving experience.
Palliative Support Care. 2012 Mar 1:1-10
Clinical nursing intervention Teaching family care givers and patient to manage symptoms 10 contacts in 20 weeks No improvement in rates of depression amongst care givers Recommends a longer intervention Journal of Pain and Symptom Management Vol 30 No 2 2 August 2005
So..
o Carers guide o Distress thermometer o Nurses trained to give practical support
10
Distress
44.8%
41.4%
17.9% 6.9%
Practical Support
Recruiting nurses to provide practical nursing care Involving volunteers in home care oSocial support
Challenges
Adding to an already heavy workload
Evaluation Behaviour change
Advocacy
Understanding our own populations needs
Engaging with the public about their views of care at the end of life Creating awareness with relevant authorities