Being involved in a patient’s heath journey when they are receiving palliative care enables care givers to assist with improving their quality of life, and provide spiritual and psychosocial support. While assessing their clinical needs, it would be astute to remember the importance of the client being able to complete or participate (as able) in basic activities of daily living (ADL).
Basic Tasks As An Important Goal
Healthcare providers must be able to adopt a flexible approach with care assessment and developing care plans. Research has found that terminally-ill patients have a feeling of relative wellbeing when they are able to perform activities in daily life. The importance of being able to perform basic human needs activities (independently or with assistance) should be discussed as a viable goal for patients that you care for. Often seen by care staff as activities that can easily be hurried, it should not be forgotten that the significance of being able to carry out this often previously automatic task, impacts greatly on your patient’s self-worth and self-esteem. These activities can be an important goal and may also have implications for work, social life, relationships and the home environment. Engaging patients and their family members or caregivers in constructive conversations regarding care planning can address functional decline and the feeling of helplessness.
Participation in healthcare goals can help alleviate the feeling of powerlessness, loss of control or lack of choice, and thus help to boost morale and often quality of life.
Assessment Through The Trajectory Of The Illness
During the trajectory of an illness, priorities change with the fluctuation of symptoms. Understanding and being aware of how risk factors affect the way that symptoms are expressed will help care givers communicate with patients and discover underlying needs. Continual assessment can help uncover masquerading of symptoms and your patient’s ability to participate in their daily activities.
Symptoms can be influenced by cognitive impairment or emotional distress. When a patient says they feel fatigued, they may be depressed, or if they say they are anxious, they may also be suffering from pain or shortness of breath. Be aware of what your patient can achieve daily, remembering the completion of a simple ADL task may be the emotional boost that is needed for that day.
Different Components Of ADL Assessment
Personal activities, such as bathing, dressing, personal hygiene and grooming, may be achieved with the use of assistive devices, adapting the home to suit the patients’ needs, or by prioritising activities.
Household activities including housework and leisure activities (e.g. watching television or exercise), may be achieved by the re-training of actions, or receiving help with some activities, thus sustaining self-reliance in the more important tasks. Again adapting the environment to suit the patient’s needs can be of benefit.
Helping the patient and their loved ones understand the importance of maintaining their role in the family during the illness and involvement in family decisions will assist with the emotional wellbeing of the patient.
Setting up work areas or rearranging room functionality can assist in the patient’s ability to continue to participate in areas such as work, rehabilitation goals and self-training programs.
Referral to other health professionals (such as occupational therapists) to become involved in the patient’s healthcare team will allow care givers to utilise their expertise in assessing the client’s physical needs, and in turn boosting their psychological status.
The World Health Organisation’s (WHO) definition of palliative care is:
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems; physical, psychosocial and spiritual.
During this emotional and uncertain time going back to basics will help.
When It’s All Said and Done
Loss of the ability to complete ADL’s is often emotionally and physically distressing for patients and can lead to a loss of self-worth. Care givers who are acutely aware and place special emphasis on patient’s changing needs, will be able to assist patients to prioritise goals and plans. Care should be continually revised and quickly assessed to cater for these changes. Planning ahead with patients and relatives when relevant will also enable for care contingencies to be easily adapted as indicated, allowing for a smooth transition in changing circumstances.
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- Lindahl-Jacobsen, L, Gilså Hansen, D, La Cour, K & Søndergaard, J 2014, ‘Evaluation of a Complex Intervention to Improve Activities of Daily Living of Disabled Cancer Patients: Protocol for a Randomised Controlled Study and Feasibility of Recruitment and Intervention’, BMC Health Services Research, vol. 14, pp. 194, viewed 14 July 2016, http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-194
- Strasser, F 2006, ‘Palliative Care: Evaluation Instruments in Daily Clinical Practice’, Annals of Oncology, vol. 17, supp. 10, viewed 18 July 2016, http://annonc.oxfordjournals.org/content/17/suppl_10/x299.full.pdf
- World Health Organization 2016, WHO Definition of Palliative Care, WHO, Geneva, Switzerland, viewed 18 July 2016, http://www.who.int/cancer/palliative/definition/en/
Susan Tredenick is a healthcare consultant with extensive experience in aged and community care. Operating in a range of industries, including Not-for-Profit, NGO and Private companies, she has a special interest in supporting people to be engaged with their healthcare management. Working with innovative companies allows this to be a reality as well as develop her interest in delivering speaking engagements to the community. With a background in nursing and management, her career includes roles in clinical and case management as well as project management with Telehealth and Telecare Research.