9.1 Informed Consent

Regulated health professionals have a legal and professional responsibility to obtain consent for delivering any treatment, with clear and complete information relating to the risks, benefits, and consequences of giving or refusing the intervention. The person (or substitute decision maker) can then make informed person-centered decisions about any treatment done for a therapeutic, preventative, palliative, diagnostic, or health-related purpose. Persons are assumed to be capable of consenting to treatment according to the Health Care Consent Act, 1996, despite their mental condition/capacity. Even if a person has dementia, they may be able to consent to simple diet interventions according to their wants, needs and preferences. Still, they may be unable to consent for a more complex medical intervention.   

Palliative Care

Palliative care is an interdisciplinary approach to providing physical, psychological, and spiritual support to patients who have a life limiting illness (Nova Scotia Health Authority, 2017). Hospice is a form of palliative care, but not all palliative care is hospice based. Hospice solely focuses on the last six months of life, whereas palliative care can start earlier for a someone with a serious illness (Smith, 2022). People using palliative care may still be receiving treatment for their illness, whereas people in hospice are no longer seeking treatment (Hospice Foundation of America, n.d.). Some types of palliative care include medical and pharmaceutical treatments, physical therapy, nutritional support, counselling, spiritual support, as well as support for families (American Society of Clinical Oncology, 2022). Palliative care is intended to complement other forms of healthcare, not replace them (Nova Scotia Health Authority, 2024).

Palliative care is indicated for those who have a life-limiting illness to provide support and help preserve dignity. Palliative care can take place at home, hospital, or a long-term care facility (Canadian Institute for Health Information, 2023b). Support services should be discussed with patients and caregivers so they can be informed of their options. Written information may be helpful as the patients and caregivers may have difficulty remembering things said during an emotional conversation. Additionally, people with dementia or other cognitive impairments may not remember what was discussed. With so many elements of palliative care available, each patient will have a different experience.

Patients with chronic disease often experience nutritional concerns that can be addressed through methods used in palliative care. Guides for improving nutritional intake during palliative care exist for patients and caregivers. Reduced appetite and weight loss are common during palliative care, so patients are advised to eat several small high calorie and high protein meals that they enjoy (Adelaide Hills Community Health Service, n.d). Palliative care is about providing comfort and dignity, so it’s important that food is enjoyable. Culturally appropriate foods should be provided. Depending on the illness or treatment being received, the patient may have dysphagia, dry mouth, constipation, nausea, or throat pain. Patients experiencing these difficulties should consult with an appropriate health care professional for strategies or medications to mitigate symptoms. Some patients may need feeding tubes and may opt to stop their use if they find them uncomfortable (Adelaide Hills Community Health Service, n.d).

Once the patient reaches the hospice stage, nutritional interventions may not extend life, so feeding for comfort is recommended (Canadian Virtual Hospice, 2024). Some people may opt to refuse food and water. Some people choose this to end their suffering and expedite the dying process. This process is known as Voluntary Stopping Eating and Drinking, or VSED, in the hospice community (Compassion & Choices, n.d.). The timeframe for VSED varies between patients anywhere from days to weeks and depends on several factors including the patient’s hydration status, health condition, medications, and age (Compassion & Choices, n.d.). Each person has unique variables, meaning no two VSED journeys will be the same. Consultation, evaluation, and planning with health care professionals is necessary in this process, and medical care is needed in this process (Compassion & Choices, n.d.).

The Nova Scotia Palliative Care Competency Framework contains competencies for dieticians who are part of interdisciplinary teams treating palliative patients and dieticians who focus on palliative care. Understanding the principles of palliative care, cultural safety, communication, optimizing comfort and quality of life, care planning and collaboration, grief and bereavement, professional and ethical practice, and advocacy are all competencies listed by the framework (Nova Scotia Health Authority, 2017). The framework also lists nutrition-related competencies for other parts of the team, such as nurses, occupational therapists, speech-language pathologists, pharmacists, and primary care physicians, most of which relate to advocating for the patient and identifying strategies that may help them.

The main goal of palliative care is to improve the patient’s and their families’ quality of life. Health care professionals have a professional and moral obligation to help their clients navigate their options in a culturally appropriate manner and respect their wishes. Each patient has unique needs and circumstances, which means each patient’s palliative experience will also be individual and unique.

9.3 Activity

Please read the Fazio et al. (2017) article and answer the following questions.

Fazio, Pace, D., Flinner, J., & Kallmyer, B. (2018). The Fundamentals of Person-Centered Care for Individuals with Dementia. The Gerontologist, 58(suppl_1), S10–S19. https://doi.org/10.1093/geront/gnx122

References