Food and fluids in Palliative and End of Life care Resource nurses study day. Learning Objectives. Literature. Oral intake. Abnormal taste.

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Food and fluids in Palliative Care Food and fluids in Palliative and End of Life care Resource nurses study day Jean Clark RN PhD Clinical Nurse Specialist - Lead Hospital

care trajectory Describe potential benefits and burdens of artificial hydration and nutrition at the end of life Understand the appropriate use of hydration and nutrition

64, pg 28) Literature Decreased oral intake of food and fluids and anorexia is a frequent problem at the end of life - 39-82% of patients receiving palliative care (1-3)

tends to focus on artificial hydration and nutrition (practices, clinical effects, attitudes, ethics) (6-13) Oral intake Abnormal taste Dry mouth Decreased secretion of

anticholinergics) Related to Ca or debility anxiety, depression dehydration, infection Sour Bitter Sweet Salt 50% of people with advanced cancer will experience alteration

1 Food and fluids in Palliative Care Food and fluids in Palliative and End of Life care Resource nurses study day Jean Clark RN PhD Clinical Nurse Specialist - Lead Hospital palliative care team & Education and Research Unit Arohanui Hospice 13 th August 2013 Learning Objectives Understand issues related to food and fluids along the palliative care trajectory Describe potential benefits and burdens of artificial hydration and nutrition at the end of life Understand the appropriate use of hydration and nutrition at the end of life and how to discuss this with patients their relatives and carers (Independent review of the Liverpool care pathway 2013, recommendation 1.64, pg 28) Literature Decreased oral intake of food and fluids and anorexia is a frequent problem at the end of life % of patients receiving palliative care (1-3) Loss of appetite is one of the most common symptoms in patients when referred to palliative care (2) Causes considerable emotional distress for relatives (3&4) Literature tends to focus on artificial hydration and nutrition (practices, clinical effects, attitudes, ethics) (6-13) Oral intake Abnormal taste Dry mouth Decreased secretion of saliva Diseased buccal mucosa Excessive evaporation of fluid Caused by the cancer By treatment Radiotherapy, surgery, stomatitis Drugs (opioids, diuretics, anticholinergics) Related to Ca or debility anxiety, depression dehydration, infection Sour Bitter Sweet Salt 50% of people with advanced cancer will experience alteration in taste Why? decreased sensitivity of taste bud, decreased numbers, toxic dysfunction, nutritional deficiencies or drugs Exacerbated by: Poor oral hygiene Oral candidiasis (thrush) Sense of smell decreases with age 1

2 Reduced oral intake: Address reversible causes Fear of vomiting Food Unappetising Too much Early satiety Dehydration Constipation Sore mouth Pain Fatigue Malodour Heartburn Biochemical Hypercalcemia Hyponatraemia Uraemia Secondary to treatment Drugs Radiotherapy chemotherapy Disease process Obstructions and occlusions, loss of swallow reflex Anxiety Depression Food and fluids in EOL care The patients son is concerned that his mother is not drinking or eating he asks you what will happen about now, how will she get fluids? COMMEND study COMMunication regarding food and fluids towards the END of life AIM: To gain insight regarding communication related to food and fluids at the end of life in a specialist palliative care service in NZ METHODS Observational, qualitative research Participant observations Interviews (staff and bereaved relatives) QODD questionnaire Bereaved relatives' perspectives of the patient s oral intake towards the end of life: a qualitative study. in Palliative Medicine Volume 27 Issue 7, July 2013 Key themes: relatives (23) Meaning of oral intake at the EOL for family members Nutrition Enjoyment Social time Structure the rhythm of the day Accommodating and tempting Interpreting and responding to decreased oral intake included recognising Changes as part of the process The vicious circle The patients choice/ their choices Communication Vicious circle Will try to eat for family, although no interest at all Is distressing (mentally and physically) Want patient to eat (more) You have to eat Still eating, thus not dying Overall conclusions Decreasing oral intake at the end of life has multiple meanings Psychological and social aspects of oral intake at the end of life are significant and need to be openly addressed PATIENT Keeping eachother in the dark FAMILY Perceptions of decreasing oral intake are interconnected with awareness of dying Feels the distress of family due to not eating Don t want family to be upset Don t want to waste food Tempting, will try everything Don t realize not eating due to dying, think will die if not eating Communication with health care professionals regarding oral intake at the end of life seems limited An opportunity to communicate about oral intake (including written material), and importantly, about dying 2

3 Artificial nutrition and hydration in the last week of life in cancer patients: practices and effects. A systematic literature review Raijmakers, et al, Annals of Oncology, advance access published January Questions (1)how and how often is AN and/or AH provided in the last week of life of cancer patients; (2)what is the effect of AN and/or AH during the last week of life on the quality of life of cancer patients; and (3)does providing or not providing AN and/or AH hasten death or prolong life? Results 2198 papers 16 (11 from Asia) Reported percentages of cancer patients receiving AN or AH in the last week of life varied from 3% to 53% and from 12% to 88%, respectively. Five studies reported on the effects of AH: two reported positive effects (less chronic nausea after 48h and less physical signs of dehydration after AH), two reported negative effects (more ascites 24h before death and more intestinal drainage after AH) and four reported no effects on other outcomes, such as terminal delirium, thirst, chronic nausea and fluid overload. No study reported on the sole effect of AN. ANH was in one study found not to change patients comfort or survival time. Conclusion Providing AN or AH to cancer patients who are in the last week of life has been reported to be a frequent practice. Evidence on the effects on quality of life and length of survival of its provision or non-provision is scarce. Further research will contribute to better understanding of this important topic in end-of-life care. Cochrane (Level A evidence - eg RCTs and high quality prospective controlled studies) Currently insufficient evidence to make recommendations for practice regarding medically assisted hydration and nutrition in palliative care patients. Benefits and burdens For a treatment to be morally justified, there has to be greater benefit than burden. Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted hydration for palliative care patients. Cochrane Database Syst Rev 2008(2) Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted nutrition for palliative care in adult patients. Cochrane Database Syst Rev 2008(4) (Berlinger cited by Resse 2010, p1 Medscape, Exclusive Ethics survey: Should I keep this patient alive, accessed from MY ) 3

4 Artificial hydration yes, maybe.! Symptom for which dehydration is most likely the cause (thirst, malaise, delirium) Increased oral intake not feasible Anticipation it will relieve symptoms (severe dysphagia, vomiting or diarrhoea) Patients underlying physical condition is generally good (e.g. some people with head and neck cancer) Patient is willing Patient and family understand the purpose is to relieve symptoms and not cure. It is advisable initially to give a provisional time limit for parental hydration, e.g. 2-3 days, after which it will be reviewed and if not helpful discontinued Likely burdensome when The patient requests not to have an invasive procedure The burdens out weigh the likely benefits Likely to be harmful if at risk of fluid overload (e.g. renal failure, congestive heart failure). Likely to be harmful if albumin low normal range 35-45gL (3 rd spacing impact on tissue integrity and patient discomfort) Likely to be harmful if IV access an issue and/or recanulation required Likely to be harmful if precludes preferred place of care The patient is moribund for reasons other than dehydration Quotes: Frank Brennan Standing on the platform. Stories and reflections from palliative care Too often, as doctors, we speak practically and are heard emotionally (pg 17) That death, that unique loss, will be remembered by that family and the story told over and over. What we do, how we do it and what we say will enter the narrative of that family forever. We now know that families have extraordinary recall of those last days where they were, what they wore, what the doctor or nurse said when they entered the room. All of it shall be remembered (pg 59) Food and fluids are often a source of concern The ethical situation is not that the patient is failing to drink and therefore will die, but that the patient is dying and therefore does not wish to drink. (Lennard-Jones, J. E,. Journal of the Royal College of Physician of London, p39-45, 33 (1) January/February 4

5 References 1. Hopkinson JB, Wright DN, McDonald JW, Corner JL. The prevalence of concern about weight loss and change in eating habits in people with advanced cancer. J Pain Symptom Manage Oct;32(4): Potter J, Hami F, Bryan T, Quigley C. Symptoms in 400 patients referred to palliative care services: prevalence and patterns. Palliat Med Jun;17(4): Yamagishi A, Morita T, Miyashita M, Sato K, Tsuneto S, Shima Y. The care strategy for families of terminally ill cancer patients who become unable to take nourishment orally: recommendations from a nationwide survey of bereaved relatives' experiences. J Pain Symptom Manage Nov;40(5): Oi-Ling K, Man-Wah DT, Kam-Hung DN. Symptom distress as rated by advanced cancer patients, caregivers and physicians in the last week of life. Palliat Med Apr;19(3): WHO Definition of Palliative Care [database on the Internet]2012 [cited June 21, 2012]. Available from: 6. Raijmakers NJ, van Zuylen L, Costantini M, Caraceni A, Clark J, Lundquist G, et al. Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects. Ann Oncol Jul;22(7): Buiting HM, van Delden JJ, Rietjens JA, Onwuteaka-Philipsen BD, Bilsen J, Fischer S, et al. Forgoing artificial nutrition or hydration in patients nearing death in six European countries. J Pain Symptom Manage Sep;34(3): Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted nutrition for palliative care in adult patients. Cochrane Database Syst Rev. 2008(4):CD Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted hydration for palliative care patients. Cochrane Database Syst Rev. 2008(2):CD Geppert CM, Andrews MR, Druyan ME. Ethical issues in artificial nutrition and hydration: a review. JPEN J Parenter Enteral Nutr Jan-Feb;34(1): Raijmakers NJ, Fradsham S, van Zuylen L, Mayland C, Ellershaw JE, van der Heide A, et al. Variation in attitudes towards artificial hydration at the end of life: a systematic literature review. Curr Opin Support Palliat Care Sep;5(3): Bryon E, de Casterle BD, Gastmans C. Nurses' attitudes towards artificial food or fluid administration in patients with dementia and in terminally ill patients: a review of the literature. J Med Ethics Jun;34(6): Del Rio MI, Shand B, Bonati P, Palma A, Maldonado A, Taboada P, et al. Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision-making among patients, family, and health care staff. Psychooncology Dec McClement SE, Degner LF, Harlos MS. Family beliefs regarding the nutritional care of a terminally ill relative: a qualitative study. J Palliat Med Oct;6(5):

Artificial Hydration and Nutrition at the end of life Providing effective mouth care. Dr Sarah Human & Catherine Hughes RN

Artificial Hydration and Nutrition at the end of life Providing effective mouth care Dr Sarah Human & Catherine Hughes RN Dying is not only a physical event it is the conclusion of a life defined in its