Fundamentals of Care of the dying patient 2020

Fundamentals of Care of the dying patient 2020 -10 -02 Elisabeth Kenne Sarenmalm

Fundamentals of Care of the dying patient • Background • Fundamentals of Care • Fundamentals of Palliative Care 2020 -10 -02 Elisabeth Kenne Sarenmalm

A growing concern • The way basic or fundamental care is delivered in health care settings, and how nursing is experienced by patients (Francis, 2013; Garling, 2008) • Many health systems fail to optimaze the potential of their nursing workforce (Institute of Medicine, 2011) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Nursing • As the largest global healthcare professional group, nursing has a central role in ensuring safe, affordable and respectful care for its patients (Institute of Medicine, 2011) • However, what also comes to light is the ongoing challenge facing the nursing profession in ensuring that the basics of care carried out correctly (Commissions on the Future of Nursing and Midwifery, 2010; Care Quality Commission, 2010; National Expert Commission, 2012) 2020 -10 -02 Elisabeth Kenne Sarenmalm

2020 -10 -02 Elisabeth Kenne Sarenmalm

Compassionate Caring & Committed Nursing has not explored the fundamental aspects of patient care in a systematic, conceptually coherent, scientific way (Kitson et al, 2014) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Identifying the Fundamentals of Care (Fo. C) • International Learning Collaboration (ILC) • Meta Narrative Review Methodology • Cochrane Systematic Reviews – The role of the Fundamentals of Care (Fo. C) Node within the Cochrane Nursing Care Field (CNF) (Kitson et al 2010) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Results of the Meta Narrative Review Nutrition Safety Elimination Comfort (including pain Mx) Mobility Dignity Sleep & rest Respecting Choice Personal hygiene Communication Temperature control Privacy Respiration Sexuality Published in International Journal of Nursing Practice: Kitson A, et. al, 2010, 16: 423 -34

Palliative Care Nursing 2020 -10 -02

Palliative Care • Medical technology has gradually come to frame and dominate definitions of palliative care (Mc. Namara 2001) • Prioritize symptom control as a key function (Ferrell & Coyle, 2010) • The art and science of palliative care nursing has received significant less attention 2020 -10 -02 Elisabeth Kenne Sarenmalm

Palliative Care and Nursing • Shares common roots, goals, and values, • are a multifaceted mission, and • the care of dying patients is an essential aspect of nursing “Nursing is primarily assisting the individual in the performance of those activities contributing to health and its recovery, or to a peaceful death” (Virginia Henderson 1978, 1997) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Fundamentals of Palliative Care 2020 -10 -02 Elisabeth Kenne Sarenmalm

• • • • Fundamentals of Palliative Care Safety, prevention and medication Communication and education Respiration Eating and drinking Elimination Personal cleansing and dressing Temperature control Rest and sleep Comfort (including pain management) Dignity Privacy Respecting choice Mobility Sexuality 2020 -10 -02 Elisabeth Kenne Sarenmalm (Kitson et al 2010)

Safety, prevention and medication • A high risk for wounds, falls and adverse events such as healthcare associated infections • Individuals at the end of life are more vulnerable to medical errors (Myers & Lynn 2011) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Safety, prevention and medication • They are exposed to intensive and multi-drug treatment with a high risk of error and may suffer more harm from errors because they are frail and have less reserves (Currow et al 2007; Al-Shahri et al 2003) • They often lack decision-making capacity or even consciousness, making it difficult to identify the patient’s will, to re-evaluate treatment decisions or to detect errors and the harm that is associated with them (Casarett 2003) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Dignity Bodily losses • Patients with a lack of capacity of self-containment experienced a total disintegration of self and body (Lawton 2000) • The disintegration and smell of patient´s body were a very distressing event for both dying patients and their carers (Armstrong-Coster 2004) • Patients who were unable to control their bodily functions were more likely to be labelled by others as incompetents (Mc. Namara 2001) • Hospitals are often ill-prepared to provide dignified care for dying patients (Jors 2014) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Dignity Bodily care Caregiving was often carried out in interaction with the dying person: ”When it comes to a certain kind of wounds one would like to act quickly because of the smell, but if you listen to yor patients, they tell us how to manage that” (Lindquist et al, 2012) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Comfort Bodily comfort • Mouth Care – A wide variety of activities – Different professionals engaged – Integrated with other activities (facilitating relationships, ethical issues) • Positioning the dying person • Needs and comfort of family members (Lindquist et al, 2012) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Comfort Creating an Aethethic, Safe, and Pleasing Environment • A wide repertoire of activities – In both home and care settings – Beneficial physical, sensory, and personal environments (Lindquist et al, 2012) A woman, in the end-of-life “The environment is important. I think it is so very essential and I think that people have not quite understood how important it is…” (Rasmussen et al. , 2000) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Respecting Choice Woman, 97 years old: Physician: “Seriously exhausted yet talkative lady admitted to the ward. Has been severely ill the last two weeks, and now she is so weak that she could no longer protest why they sent an ambulance. The patient has previously expressed a strong desire to die at home. “ After 17 days she dies quietly 2020 -10 -02 Elisabeth Kenne Sarenmalm

Sexuality • A non-issue? ? ? • Sexual functioning • Intimacy and touch • Emotional and physical closeness • Self-image as male or female 2020 -10 -02 Elisabeth Kenne Sarenmalm

Sexuality Woman, 55 years old: I don’t want to, I’m absolutely effaced. I don’t feel attractive as a woman, I feel like a nothing. It’s also having lost something—not feeling feminine or attractive or—I usually feel like an “it” on legs, because I kind of look like what I am inside. I feel like a little wounded child. (Kenne Sarenmalm 2009) 2020 -10 -02 Elisabeth Kenne Sarenmalm

Best Care of the Dying Patient • Using the Fundamentals of Care Framework as a structure in the National Program for Palliative Care • Implement an evidence based model for fundamentals of care in palliative care nursing 2020 -10 -02 Elisabeth Kenne Sarenmalm

Best Care of the Dying Patient Compassionate Caring & Committed Nursing Regardless - age, or ethnicity - diagnosis, or - care settings 2020 -10 -02 Elisabeth Kenne Sarenmalm

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