Facilitating Home Death & Supportive Care (2022) PDF

11/8/2022 Facilitating a home death and supportive care in the final days 2022 Some Materials used with permission from Dr. M. Harlos and Joanne Mills Palliative CNS 1 Objectives Examine the physiologic changes in the dying process Analyze the concept of a “good death” Discuss the common concerns &...

11/8/2022 Facilitating a home death and supportive care in the final days 2022 Some Materials used with permission from Dr. M. Harlos and Joanne Mills Palliative CNS 1 Objectives Examine the physiologic changes in the dying process Analyze the concept of a “good death” Discuss the common concerns & symptoms encountered in the final days & hours of life Discuss approaches to managing these concerns / symptoms Examine issues surrounding hydration and nutrition Select nursing interventions to facilitate client comfort Nurse’s role in facilitating a home death 2 What is a good death? Steinhauser et al. Factors considered important at the End of Life by Patient, Family, Physicians, and Other Care Providers. JAMA 2000. 3 1 11/8/2022 Preparing the Patient & Family Time spent preparing pt / family for EOL: Reduces anxiety & fear Increases their confidence & competence to provide care Increases their sense of value & gifting Creates good memories of the experience Prepares them for impending losses Helps shift roles, responsibilities & support systems Reduces their dependence on HC providers Emanuel & Librach, 2007 4 Promoting a Peaceful, Dignified Death Maintain the person’s basic sense of identity & self esteem Provide gentle, respectful care (body, mind & soul) Regard the individual as responsible & capable of clear perceptions, honest relationships & purposeful behaviour despite physical decline 5 Promoting a Peaceful, Dignified Death cont’d Alleviate suffering by controlling pain & other physical symptoms, calming fears, helping the indiv. do the most they can, the best way they can Provide privacy Help preserve / restore the continuity of NB relationships Guide the indiv / family to let go of former hopes & activities when appropriate Help fulfill a final wish or resolve a pressing concern (Capital Health Regional Palliative Care Program, 2002) 6 2 11/8/2022 Completing Relationships Dying can be a rich & meaningful time of life, a time when families have a chance to say to each other: Forgive me, I forgive you, Thank you, I love you, Goodbye. Ira Byock 7 Talking about dying “Many people think about what they might experience as things change, and they come closer to dying. Have you thought about this regarding yourself? Do you want me to talk about what changes are likely to happen?” Dr. M Harlos 8 Talking about dying….. First, let’s talk about what you should not expect. You should not expect: pain that can’t be controlled breathing troubles that can’t be controlled “going crazy” or “losing your mind” Dr. M Harlos 9 3 11/8/2022 If any of those problems come up, we will make sure that you’re comfortable & calm, even if it means that with the medications that we use you’ll be sleeping most of the time, or possibly all of the time. Do you understand that? Is that approach OK with you? Dr. M Harlos 10 You’ll find that your energy will be less, as you’ve likely noticed in the last while. You’ll want to spend more of the day resting, and there will be a point where you’ll be resting (sleeping) most or all of the day. M Harlos 11 Gradually your body systems will shut down, and at the end your heart will stop while you are sleeping. No dramatic crisis of pain, breathing, agitation or confusion will occur we won’t let that happen. M Harlos 12 4 11/8/2022 As the Person is Dying… Encourage family to talk to person even if she is not responding / seeming to hear Suggest they tell the dying person what she meant to them, how she will be remembered, & say their goodbyes Use role modeling in words & actions Encourage gathering of family members & grieving 13 Helping family… Explore fears about their loved one’s dying, & their ability to cope Support by anticipating & discussing fears openly & non-judgmentally Teach indicators of imminent death Instruct about symptom mgmt & comfort measures – to extent they want to understand / be involved 14 Non physiological Signs of Approaching Death Progressive dependence Progressive withdrawal & detachment 15 5 11/8/2022 Physiological Signs of Impending Death Decreased urine output, dark colored urine Weakening pulse Anxiety, restlessness, confusion, hallucinations AKA “Delirium” Fluctuating LOC with gradual decline – accompanied by decreased awareness, dysphagia & flaccid muscles Changes in pattern & sounds of breathing – periods of apnea (Cheyne –Stokes), sounds of congestion Progressive coldness, discoloration & mottling of skin Capital Health Regional PC Program, 2002 16 Stroke Cancer Discontinued Dialysis End-Stage Lung Disease Post-99 Bedridden Ischemic Encephalopathy Can’t clear secretions NeuroDegenerative Pneumonia Dyspnea, Congestion, Agitated Delirium M Harlos 17 Predictable Challenges in the Final Days Functional decline – transfers, toileting Can’t swallow meds – route of administration Terminal pneumonia dyspnea congestion delirium: >80% At times ++agitation Concerns of family & friends M Harlos 18 6 11/8/2022 Concerns of Patient, Family, and Friends How could this be happening so fast? What about food & fluids? Things were fine until that medicine was started! Isn’t the medicine speeding this up? Too drowsy! Too restless! Confusion… she’s not herself, lost her already What will it be like? How will we know? We’ve missed the chance to say goodbye M Harlos 19 Which Came First.... The Med Changes or the Decline? Steady decline Accelerated deterioration begins, medications changed Rapid decline due to illness progression with diminished reserves. Medications questioned/ blamed M Harlos 20 The Perception of the “Sudden Change” When reserves are depleted, the change ─ seems sudden and unforeseen. However, the changes had been happening. That was fast! Melting ice = diminishing reserves Day 1 Day 2 Day 3 Final M Harlos 21 7 11/8/2022 Death at home 22 Death At home – implementation -Expected death – Prognosis is understood -Patient & family prepared -Supports in place -Services available -Contingency plan - Explain 23 Case study by Dr. Miller Case 1 - Mrs. J. Robert – 75 yo with Lynch Syndrome hereditary cancer syndrome (metastatic Cancer) Stage 4, further curative treatment is no longer an option. Cachectic woman in hospital May 8, 2012. 44kg, with a 10 kg smile. She was very aware that her disease had continued to progress and her prognosis very short. She indicated very clearly her desire to be at home “in my own bed”. Despite being very weak and fatigued she was able to direct her wishes and continued to act as matron for her family of 4 adult children and her husband Her plan was clear. To go home and to die there. Not to have any more tests or medicines. 24 8 11/8/2022 Can the family do this? Practically? Elderly couple? Confusion/ incontinence/costs. Psychologically? Mental health or addiction issues. Safe Opioid storage Out of keeping with family’s expected role or usual activity. Family supports? 25 25 What steps do you need to do before she can go home and die at home? Forms need to be completed. Did the patient fill out an end-of-life directive? Show example Notification of anticipated death at home and direction from the patient’s physician (5 copies) 1)To Local or Regional EMS 2)To Funeral Director 3)To office of the Chief Medical Examiner or RCMP if death occurs in a location where there is no medical examiner.4) Keep one in the home. 5) Physician keeps 1 in his file. 26 What steps do you need to do before she can go home and die at home? Points to consider when patients enter the dying phase: Reconfirm a patient's goals of care, preferred place of care, what to do in an emergency. Connect with home nursing (already in place) Ensure that required forms are completed (No CPR and/or Notification of Expected Home Death). Get discontinuation of non-essential medications. (Explain and provide examples) 27 9 11/8/2022 What steps do you need to do before she can go home and die at home? Arrange for subcutaneous (SC) / transdermal medication administration,SL or IN administration when a patient is no longer able to take medications by mouth. Arrange for a hospital bed +/- pressure relief mattress. Arrange for a Foley catheter as needed. Obtain an order for a SC anti-secretion medication (e.g., atropine, glycopyrrolate). Standing orders for Home death – show example from Southern Health 28 The anticipated symptoms (Physical and Functional) that patients can experience at EOL 1. Pain 2. Dyspnea 3. Excessive Respiratory secretions 4. Agitation, confusion –aka “delirium” 5. Nausea & Vomiting 29 29 anticipated symptoms/changes experienced at end-of-life (continued) 6. Loss of appetite (can be many days before) 7. Inability to Swallow 8. Dehydration 9. Incontinence Note: Days to even weeks before pt’s can be very fatigued and sleeping most of the time. * Explain what happens at the end. 30 30 10 11/8/2022 Crisis meds Show Crisis med orders. Lock box meds ( only nurses can access) in WRHA. ( slowly moving away from this explain). Why no standing orders in the WRHA? Meds in Lock box: Hydromorphone, Morphine, Nozinan, Lorazepam, and Scopolamine gel. Mini kits available in the WRHA. 31 Actively Dying In the context of a progressive life-threatening illness 1. Low level of consciousness – Fluctuating LOC with gradual decline 2. Changes in breathing patterns – rapid shallow breathing, Cheyne-stokes, &/or moist respirations (respiratory congestion) See next slide. 3. Incontinence of urine &/or feces- closer to impending death changes to dark concentrated urine. 4. Color & temperature changes – cyanosed nail beds, pallor (face), coolness of extremities- mottling of extremities 32 32 Common Breathing Patterns in the Last Hours Cheyne-Stokes Rapid, shallow “Agonal” / Ataxic M Harlos 33 11 11/8/2022 Case Study -by Dr. Miller -Nursing Services were arranged but she initially refused to have a hospital bed – even as a backup. As the Palliative care nurse you saw her in her home one week after her discharge from hospital on May 18th. She was comfortable, but had more pain when she moved. She was beginning to have more trouble getting out of bed to the washroom, so she agreed to a urinary catheter to make it easier for her family and caregivers. She agreed at this time to a hospital bed What kind of pain is Mrs. Robert exhibiting? What kind of order will you require to manage this kind of pain? You see her on Friday May 25th as her pain had gotten much worse. She now rates her pain as a 10/10 , she can no longer take anything by mouth, her nausea and vomiting is also rated as 10/10. What will you do next? 34 Managing pain at End of Life 1. Most common is use of sc meds, either continuation of previous opioid or initiation of low dose of hydromorphone or morphine 2. Transdermal meds can be continued, but usually available in too high a dose to initiate at this time 3. Sublingual & sub-buccal & Intranasal 35 35 Dyspnea “ Opioids, Opioids, Opioids “ Often very low doses help, i.e. Hydromorphone 0.5mg s.c. q4h regularly and 0.1 mg q 30 min prn Nozinan: starting dose 2.5 to 5 mg q8h and titrate to effect. Start low to test tolerance as wide variation in patient response. Elderly patients generally respond better to Nozinan than benzodiazepines. Benzodiazepines: Lorazepam 1-2mg q4h sl/sc, midazolam intermittently or csci 1-4 mg/hr for severe dyspnea & anxiety 36 36 12 11/8/2022 Dyspnea (continued) Non-drug measures – fan, open window Home oxygen?? What assessment needs to be done? Forms for home oxygen? Oxygen-if available, esp. if pt known to be hypoxic & oxygen has assisted in the past, and if does not increase restlessness; in imminently dying phase, do not monitor O2 sats & may remove O2 as death approaches & dyspnea no longer a concern 37 37 Normal respiratory changes Mouth breathing, therefore dry mouth Provide mouth care with a soft toothbrush and water, plus nonpetroleum gel to lips with turns or care What else? 38 38 Excess Respiratory Secretions “Death Rattle” Can be distressing for family & staff Occurs in 23 - 92% of patients in the last hours Median time from onset to death is 8 – 23 hrs Most commonly – pt condition is poor, ↓ LOC If alert – pt may be anxious & fearful of suffocating Prepare family for these changes before they occur Terminology important 39 13 11/8/2022 Respiratory congestion Respiratory secretions – avoid unnecessary fluids or deep suctioning. Suctioning – Consider only if secretions are: o distressing, proximal, accessible (if you can see it) Gurgly respirations – saliva over vocal cords Glycopyrrolate 0.1-0.2 mg sc q6-8h regularly; doesn’t cross Blood Brain Barrier Atropine eye drops s/l or 0.4-0.8 mg sc q4h regularly & prn Scopolamine sc 0.3-0.6 mg q4-6 h reg & prn Scopolamine patch (Transderm V) – 1-2 q72 hrs 40 40 Delirium Herein lies a paradox (delirium), a condition that is often reversible, yet is the hallmark of dying in most patients. The challenge for the clinician: identify & treat the reversible underlying causes in a manner that is consistent with the overall goals of care. Lawlor, P. Support Cancer Care , 2002; 10:445454. 41 The Two Roads to Death Ferris et al. 1995 42 14 11/8/2022 Terminal restlessness (Delirium) Pt. unconscious and moving about in bed Common -Rule out any physical causes such as: pain, urinary retention, or constipation. If cannot be reversed, needs to be treated pharmacologically 43 43 Differentiating Between Pain & Delirium Moaning & groaning of terminal delirium may be mistaken for pain Look for tension across forehead, furrowing of brow, facial grimacing If absent, vocalization likely d/t delirium Trial of opioids may help differentiate NB – be aware that with ↓ renal functioning assoc with dying, extra opiate doses can lead to ↑ metabolite accumulation & ↑ delirium 44 Terminal restlessness (continued) Neuroleptics first choice for restlessness & agitation –aka Delirium Nozinan (methotrimeprazine) 10-50 mg sc q48h and titrate, Haloperidol 0.5- 5mg sc q4-8 h -Benzodiazepines: lorazepam 1-2 mg sl/sc q4h prn on an adjunct basis – a Midazolam continuous sc infusion 1-4 mg/hr via CADD Pump for severe restlessness/agitation 45 45 15 11/8/2022 Opioid Induced Neurotoxicity (OIN) Potentially fatal neuropsychiatric syndrome of: Cognitive dysfunction Delirium Hallucinations Myoclonus / seizures Hyperalgesia / allodynia Increasing incidence – practitioners more comfortable & aggressive with opioids Early recognition is critical 46 OIN - Recognition Myoclonus – twitching of large muscle groups Delirium Rapidly escalating dose required Pain “doesn’t make sense” (Allodynia, Hyperalgesia); not consistent with recent pattern or known disease 47 OIN - Treatment Switch opioid (rotation) Alternately - decrease opioid dose (not always possible) Hydration (subcut/IV) Benzodiazepines for neuromuscular excitation 48 16 11/8/2022 Nausea Pharmacological agents for Nausea/Vomiting 1)Metoclopramide 5-10 mg subcut q 4h prn 2)Haloperidol 0.5-2mg subcut q4 h prn 3)Methotrimeprazine 6.25-12.5 mg subcut q4h 49 Fluids & Foods within the terminal phase Preference for oral sips and good mouth care If concern re the need for hydration in other forms such as hypodermoclysis or IV, discuss family’s understanding & expectations: -withdrawing from food and fluid is a common aspect of the dying process (anorexia is part of the dying process) -Studies show that PEG tube feeding does not contribute to better nutritional status or longer life, nor does it improve functional status or minimize suffering. (Friedrich, 2013, Annals of Long-Term Care) *reduced food/fluid is not uncomfortable- studies show that dying patients who stop eating and drinking rarely experience discomfort due to hunger. 50 50 Burdens and Pro’s of hydration Increased fluid can contribute to symptoms such as edema, ascites, resp. congestion, nausea & vomiting Complexity and discomfort associated with administering fluids may increase agitation Increased need to void Dehydration may act as a natural anesthetic * explain May prolong suffering/dying rather than living thirst can be addressed with good mouth care; hydration does not prevent thirst Benefits of Hydration for the dying patient: to treat OIN, and hypercalcemia. Need to assess with pt/family/doctor. 51 51 17 11/8/2022 Resources for family to help with understanding the dying process Patient education materials such as Booklet: Preparing for the death of a loved one Caregiver’s resources Virtual Hospice website “When death is near” article 52 52 At the time of death Management of terminal symptoms. Support, with all team members, including spiritual care Acceptance of dying as a normal process. Acknowledge the death Patient/family as the unit of care. Effective communication Check with family about all practical aspects (Safe med disposal) 53 53 53 What does the family have to do after the death? DO NOT Call 911 Call and notify the on-call Palliative care nurse or physician Do you want the nurse or physician to come and pronounce the death Call the funeral home Forms for vital stats agency- within 48hrs of death 54 18 11/8/2022 Bereavement visit after a home death Depends on the agency sometimes 1 or 2 Ideally first visit approx. 4 weeks after death Second approx. 6 months after death Appropriate educational materials for Grief and bereavement. 55 19