THE IMPORTANCE OF END-OF-LIFE PLANNING

Palliative care can be defined as an approach to health that involves improving the quality of life of patients and their families that are facing issues related to chronic, incurable and life-threatening illnesses  (Wallerstedt et al., 2019). It is vital to note that, palliative care is not just limited to the elderly, but can be anyone with an incurable illness and the goal is to improve quality of life. The stages of palliative care include; stable, unstable, deteriorating, terminal and bereavement (McClelland et al., 2020). Symptoms heavily influence quality of life for individuals on palliative care, hence managing these symptoms is crucial to providing comprehensive holistic care that meets the needs of the patients and family. Evidence is growing about the beneficial role palliative care plays in improving the quality of life for individuals with incurable illnesses (Smith & Newbury, 2019).

Figures from 2017-18 show that 77,369 hospitalisations were palliative care related and 55.6% of the people admitted to hospital received palliative care before death (Australian institute of health and welfare, 2019). It is important to note that palliative care conversations must go beyond the narrow discussion of resuscitation. Instead the dialogue should discuss a wide range of concerns that are shared by palliative care patients, such as pain management and disease progression. Good communication in this case can facilitate the development of a comprehensive management plan that is evidence based (Herrmann et al., 2019)  . 

Studies indicate that most patients want to have palliative care discussions’, but practitioners are reluctant to initiate the conversation (Bergenholtz et al., 2019) . This is reflected in the percentage of people with a valid advanced health care directive. Almost 50% of people will not be able to make their own end of life decisions. Less than 15% of Australians have documented what they want in their Advanced Care Directive, It is also estimated that less than 30% of people aged 65 and above have an ACD. Research indicates that having an ACD in place can reduce anxiety, depression, and stress that is experienced by families during end of life care, and that they are more likely to be satisfied with the care of their loved ones (Australian Digital Health Agency, 2019). Palliative care presents a lot of challenges for health care workers, the patient and their families. Care of the dying patients must be considered within the context of social, spiritual and cultural factors of the patient and the families (Danielsen et al., 2018).

(Bloomer et al., 2019) In a study of elderly resident that died in subacute care, found that lack of pre-hospital Advanced Care Planning and delayed vague communication on the aim of palliative care resulted in unsatisfactory end of life care. The study found that, delay in recognising and acknowledging that the resident/patients may be declining towards death resulted in delays to re-evaluation of care and the loss of opportunity to begin appropriate end of life care management. The researchers further found that poor communication took away the opportunity to adequately prepare the family for the impending death.

 (Kouyoumdjian et al., 2019) This was a qualitative semi-structured interview whose aim was to find out the perception of physicians about the transfer of dying nursing home residents to the emergency department. The researchers interviewed twelve directors of nursing. Issues identified include; difficulties in identifying end of life situation, difficulties managing refractory symptoms of palliative care, and in not knowing the residents dying wishes. The difficulties of recognising end of life situations, managing family expectations, the uncertainty of the diagnosis with or without hospital transfer is one of the main reason’s residents were transferred to hospital.       

When it comes to managing family expectations, the study found that at the end of life the families become the main decision maker. Decisions to transfer to hospital related to family wishes where frequent. But a lack of communication between clinicians and families was responsible for most hospital transfers.  When there is no open dialogue between the clinicians and families and there is a drastic change in the resident’s functional status, families in most cases feel like they are giving up on the resident if no medical intervention is pursued.  There is also a lack of confidence in nurses that work in nursing homes compared to hospital nurses. Families feel that they will get better care in hospitals rather than nursing homes.

In France only 2.5% of the deceased had advanced care planning documentations. In just 36% of the cases, nursing home residents suffering from Alzheimer’s disease had an advocate, and just five percent had written advanced care directives. However as pointed in previous studies ACDs only give guidance on whether to resuscitate or if to transfer to hospital. They are very vague when it comes to managing refractory symptoms. These are physical and emotional symptoms for which all possible treatments have failed, or it is determined that no methods are available for palliation within the time frame that the resident or patient can tolerate. These symptoms are often hard to manage without risking the resident’s consciousness. For example, in bone cancer patients, it is not the question of whether they are in pain, in most cases it is how much pain they can tolerate (Hack et al., 2017).

(Gonella et al., 2019) This was an aggregate review of 11 articles on the current methods of communication in palliative care.  Of the reviewed, seven where quantitative, three qualitative and one mixed method study.  Articles were taken from PubMed, EBSCO and CINAHL between April and May 2018. The main goal of the meta- analysis was to review the best form of communication in the National Health Service which may contribute to better quality of care during the palliative process. Three themes where identified, firstly, communication must centre around promoting the families’ understanding of health condition and the disease progression. Secondly, planning and implementation of care must be in partnership with the patient and family, lastly use and improve resident’s preferences regarding end of life care.

 In conclusion, education in palliative care communication helps health care workers in providing person centred care[GU1]  especially during end of life care. Families and the general public must be informed on the importance of having a valid advanced health care directive, as this prevents confusion when it comes to medical intervention when the resident deteriorates. Clarifying transfer preferences for injury management within the ACD, may lead to better end of life experiences for residents and improve effective resource utilisations. Having an open-ended dialogue during the palliative care process, builds trust/ confidence between families and clinicians, which may reduce the levels of anxiety experienced by nurses when carrying out clinical decisions related to end of life care.

Refences

Australian Digital Health Agenecy, 2019, A. D. H. A., 2019. (2019, March 29). My Health Record best place for Advance Care Directives [Text]. My Health Record; My Health Record. https://www.myhealthrecord.gov.au/news-and-media/media-releases/my-health-record-best-place-for-advance-care-directives

Bergenholtz, H., Timm, H. U., & Missel, M. (2019). Talking about end of life in general palliative care – what’s going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark. BMC Palliative Care, 18(1), 62. https://doi.org/10.1186/s12904-019-0448-z

Danielsen, B. V., Sand, A. M., Rosland, J. H., & Førland, O. (2018). Experiences and challenges of home care nurses and general practitioners in home-based palliative care – a qualitative study. BMC Palliative Care, 17(1), 95. https://doi.org/10.1186/s12904-018-0350-0

Gonella, S., Campagna, S., Basso, I., De Marinis, M. G., & Di Giulio, P. (2019). Mechanisms by which end-of-life communication influences palliative-oriented care in nursing homes: A scoping review. Patient Education and Counseling, 102(12), 2134–2144. https://doi.org/10.1016/j.pec.2019.06.018

Herrmann, A., Carey, M. L., Zucca, A. C., Boyd, L. A. P., & Roberts, B. J. (2019). Australian GPs’ perceptions of barriers and enablers to best practice palliative care: A qualitative study. BMC Palliative Care, 18(1). https://doi.org/10.1186/s12904-019-0478-6

Kouyoumdjian, V., Perceau‐Chambard, E., Sisoix, C., Filbet, M., & Tricou, C. (2019). Physician’s perception leading to the transfer of a dying nursing home resident to an emergency department: A French qualitative study. Geriatrics & Gerontology International, 19(3), 249–253. https://doi.org/10.1111/ggi.13600

McClelland, S., Agrawal, N., Elbanna, M. F., Shiue, K., Bartlett, G. K., Lautenschlaeger, T., Zellars, R. C., Watson, G. A., & Ellsworth, S. G. (2020). Baseline Karnofsky performance status is independently predictive of death within 30 days of palliative intracranial radiation therapy completion for metastatic disease. Reports of Practical Oncology & Radiotherapy. https://doi.org/10.1016/j.rpor.2020.02.014

Smith, C., & Newbury, G. (2019). Palliative care for community patients diagnosed with dementia: A systematic review. British Journal of Community Nursing, 24(12), 570–575. https://doi.org/10.12968/bjcn.2019.24.12.570

Wallerstedt, B., Benzein, E., Schildmeijer, K., & Sandgren, A. (2019). What is palliative care? Perceptions of healthcare professionals. Scandinavian Journal of Caring Sciences, 33(1), 77–84. https://doi.org/10.1111/scs.12603


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