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Research: Personal preferences are key for advanced care planning



Kathryn Waldegrave recaps the findings of two studies: one that explores the experience of people living with multiple chronic conditions; the other examines intellectual disabilities

Coping with MCCs: the patient experience

While multiple chronic conditions (MCCs) such as hypertension, type 2 diabetes or persistent back pain can affect all age groups, prevalence increases with age, and cultural factors influence coping mechanisms. People are now living longer, with multiple morbidities, and there is a need to explore how patients cope with the variety of symptoms MCCs can bring.

A recent study explored the experiences of the rising number of Chinese adults diagnosed with MCCs and looked at how they manage their symptoms. Adopting a qualitative descriptive approach, researchers identified that, although participants continued to live actively while coping with MCCs, these conditions had an impact on wellbeing.

Four main themes emerged from the data: by ‘appraising MCCs’, participants demonstrated ‘sense-making’ of symptoms and how to deal with them. In ‘addressing MCCs management’, participants demonstrated a desire to control symptoms by employing a variety of strategies, either prescribed medications or traditional Chinese treatments.

As family support and networking is held in high regard in Asian populations, ‘fulfilling social roles’ referred to the need to limit the impact of MCCs on others and to maintain a routine life as far as possible.

‘Maintaining psychological wellbeing’ involved efforts to reduce negative emotions, including stress, anxiety and frustration. The study highlights that people cope with MCCs in a variety of ways, and that cultural influences have a significant impact. A commentary notes that although this study was undertaken in China, it carries important messages for current UK practice. Good communication is paramount; if health professionals can understand the impact of MCCs on quality of life, and acknowledge cultural differences in coping strategies, culturally sensitive care delivery for managing the physical and psychological challenges of MCCs can be implemented and evaluated.

Study reference

Cheng, C; Bai, J; Yang, C-Y; Inder, K; Chan SW-C. ‘Patients’ experiences of coping with multiple chronic conditions: A qualitative descriptive study. J Clin Nurs. 2019, 28, pp.4400- 4411. doi.org/10.111/jocn.15022 

Commentary reference

Zhan, X; Wenchung, W; Lin, H; Jingran, L; Li, B; Li, MT; Fu, RT; Wu, Y; Wu, X; Shi, X; Lee, A; Shengxiao, X. ‘Coping with multiple morbidities: Asian perspectives to inform culturally appropriate caregiving.’ Evid Based Nurs. Published Online First: 09 January 2020. doi: 10.1136/ebnurs-2019-103211


Palliative care plans for people with IDs

People who have intellectual disabilities (IDs) are known to have more health problems than those who do not. Improvements in treatment and care mean these can now be treated as long-term conditions, rather than brief illnesses resulting in sudden death.

As a result, more people with IDs are requiring palliative care. However, this is an area of care often fraught with challenges that are not always considered in policy. Difficulties arise when people with IDs have limited cognitive or communicative function, as they are not always able to participate in advanced care planning (ACP) conversations or fully express their wishes.

A study in the Netherlands aimed to explore how ACP is undertaken with people who have a mild to moderate ID by analysing the documentation of ACP in medical notes from 15 people at end of life, and 15 people who were newly deceased. Alongside this, telephone interviews were conducted; 30 with relatives and 33 with healthcare professionals. The findings highlight the complexities of ACP for people with IDs.

Care planning conversations often excluded the patient, usually as a result of known cognitive or communication difficulties. While Do Not Attempt Resuscitate (DNAR) orders were usually documented (93% of cases), the conversations were often noted to take place in the month before death, and as a result of declining health as opposed to a case of advanced planning. To avoid ‘last-minute’ conversations in this patient group, a commentary highlights that palliative care planning should be based on personal preferences, and that a proactive approach to ACP is required.

In cases where cognitive or communicative difficulties hinder conversations, narratives or life stories could be used to include the views of people with ID, and policy and procedure should reflect this.

Study reference

Voss, H; Vogel, A; Wagemans, AMA; Francke, AL; Metsemakers, JFM; Courtens, AM; de Veer, AJE. ‘Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews.’ J Intellect Disabil Res. 2019; 63:1262–72. doi: 10.1111/jir.12664 

Commentary reference

Johansson L. ‘Time to increase the involvement of persons with intellectual disability in palliative care and research.’ Evid Based Nurs. Published Online First: 04 March 2020. doi: 10.1136/ ebnurs-2019-103188