Practicalities and Support When Death is Imminent PDF

Practicalities and Support When Death is Imminent NURS -4980-1 N OV E M B E R 7 , 2 0 2 4  The Difference Between Care and Caring Royal Alexandra Hospital, Edmonton, Alberta The Difference Between Care & Caring (youtube.com) Today’s Reflection  The Case...

Practicalities and Support When Death is Imminent NURS -4980-1 N OV E M B E R 7 , 2 0 2 4  The Difference Between Care and Caring Royal Alexandra Hospital, Edmonton, Alberta The Difference Between Care & Caring (youtube.com) Today’s Reflection  The Case of William William is experiencing decline as his cancer advances – His PPS is now 40%. His pain is managed on sustained release hydromorphone and gabapentin; he has had a celiac plexus block. At today’s visit, William reports that he is beginning to have difficulty swallowing; he continues to take his meals in his room as it is too tiring to go to the dining room. He agreed to a visit from the Rabbi. His wishes are to spend his last days at the retirement home and to reconcile with his daughter. William’s son Gabriel has taken a compassionate leave from work so that he can spend time with William. Gabriel has expressed to William that he does not want to see his sister. Gabriel has been sleeping at the retirement home on most nights. He is becoming tired and feeling “conflicted as my wife is doing everything at home but I want to be here when he dies.” Gabriel asks the nurse, “What should I expect to happen as Dad gets closer to death? How much longer do you think he has?” Terminology Actively Dying or Imminently Dying: A prognosis of death is expected to occur within hours to days. RNAO, 2011  “Life is pleasant. Death is peaceful. It’s the TRANSITION that’s troublesome.” Isaac Asimov (1920–1992) A Lasting Memory People remember the last days, hours and minutes of their loved one’s life They will recall the death as long as they live Nurses have a critical role in helping patients/clients die with peace and dignity Nurses have 3 essential roles Providing excellent clinical care Helping the patient/client and family navigate the system Helping the family know what to expect Patients/Clients and Families They wish for: Good symptom management Avoidance of suffering Care that is consistent with clinical, cultural and ethical standards Clear decision making The SUPPORT Study (Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments) Items that were rated important by patients/clients but less so from physicians Being mentally aware Having funeral arrangements planned Not being a burden Helping others Coming to peace with God  CHPCA Model of Care CHPCA, A Model to Guide Hospice Palliative Care, Ottawa, ON, Canadian Hospice Palliative Care, 2013 Domains of Issues Associated with Illness and Bereavement Preferred Place of Death Where does the individual wish to spend their final hours and days? Knowing the difference between: Acute Care Retirement Home Long Term Care (LTC) Palliative Unit Hospice Residential Home At home with Hospice Team involved Sign at home to indicate wish to remain at home Care Support & Navigation (Windsor-Essex) Hospice Home and Community Support Coordinate nursing care, E-shift and equipment Contract nursing services Necessary forms in the “home environment” – DNR and Home Pronouncement Plan Some regions use EDITH – Expected Death in the Home Symptom Response Kit (SRK) sent to home Medications Supplied Optional Atropine drops for sublingual use Dexamethasone injectable Scopolamine injectable Lorazepam tablets Haloperidol injectable Glycopyrrolate injectable Methotrimeprazine Furosemide injectable Phenobarbital injectable Benzodiazepines (including midazolam) Acetaminophen suppositories NOTE: OPIOIDS – 3 CHOICES Hydromorphone 2mg/ml Hydromorphone 10mg/ml Morphine 10mg/ml Goals of Care and DNR What has the patient expressed to their family, to the team? If patient unable to respond, are all family members on the same page? Keep the wishes of the patient as the focus of care Ensure DNR has been discussed and is in place – no matter the setting Does the patient have a cardiac implantable device – cardioverter- defibrillator? If so, need to be inactivated by deactivation or use of a magnet Organ and Tissue Donation Discussion may be sensitive and uncomfortable if left too late or in an emergency situation Do we know the patient’s wishes? Is the family aware of their wishes? Does person want to donate their body to science? Patients with ALS may want to donate their brain – usually set up with team prior to death Preparing the Family for the Physiological Changes SPIKES – Six-Step Protocol 1. Setting 2. Perception 3. Invitation 4. Knowledge 5. Explore 6. Strategy and Summary (Buckman, 1998, 2001; Kaplan 2010) Coaching/Teaching the Family Continually adjust based on: Needs Literacy level Emotions Resources: Some organizations have resources that explain what to expect Provide to family Review with family Last Hours and Days Patients in the last hours and days of life: May have physical suffering May experience significant emotional, spiritual, and social distress Require careful symptom management Families: Most need support and coaching Require care that continues through the death pronouncement and family notification of the death Benefit from bereavement support  Identifying the Actively Dying Patient Profound progressive weakness Loss of ability to close eyes Bed-bound Hallucinations involving previously deceased important people Sleeping most of the time References to going home Indifference to food and fluids Changes in respiratory pattern Difficulty swallowing Noisy breathing, pooling of airway secretions Disorientation to time with increasingly short Dropping of BP, with rising weak pulse attention span Low or lower BP not related to hypovolemia Mental status changes (delirium, restlessness, agitation, coma) Urinary retention or incontinence related to Oliguria weakness Bicanovsky L. Comfort Care: Symptom Control in the Dying. In: Palliative Medicine, Walsh D, Caraceni AT, Fainsinger R, et al (Eds), Saunders, Philadelphia 2009. Decreased Oral Intake Majority of patients will have decreased oral intake and impaired swallowing Cause is generalized weakness and sedation May cause family great distress Discuss the normal dying process and decreased need for nutrition and hydration Feeding and sips if safe – helping family remain involved Mouth care to keep tissues moist and decrease sensation of thirst Artificial Hydration & Nutrition Inability to swallow, including oral fluids, is a common phenomenon at the end of life Families often worry about thirst (and hunger) in their dying family members and what it must be like to be without water Explaining that use of hydration can actually cause a burden – fluid overload in lungs, heart working harder, edema in peripheral tissues, etc. Explaining that the body naturally knows it can no longer digest food and person’s appetite decreases naturally as closer to end of life Reports based on the observation of unconscious patients indicate that the process is quite peaceful, and no evidence exists that they are aware of the process Caregivers of the dying and patients themselves have reported that those who are near death are seldom hungry, and if feelings of hunger occur, small amounts of food by mouth are usually all the patient wants Pallium E book, 2020 Edition 4 Hydration & Nutrition Continue oral hydration as long as possible, but volumes often need to be reduced as death nears. In patients able to tolerate (and enjoy) oral fluid, frequent sips are often better tolerated nearer to the end of life, particularly those patients with early satiety (especially those with profound cachexia). Consider giving a person what they enjoy in very small quantities or place on lips – i.e. yogurt or ice cream for the taste Meticulous oral care helps provide relief Moisten the patient’s mouth with sips of water, ice chips, or sprays of a favorite beverage, or lubricants for the lips Breathing Changes Breathing pattern changes close to EOL Shallow, frequent breaths Cheyne-Stokes pattern of respirations Families may perceive as breathlessness or potential suffocation – very distressing Discontinue pulse oximetry At the very end, may have appearance of ‘fish out of water’ Airway Secretions Airway secretions (tracheal) due to loss of ability to swallow due to weakness and decreased neurological function Gag reflex weak – unable to clear secretions Different than lower respiratory secretions Very distressing to family – can sound very loud Give example of how little fluid is in throat to make that sound – one way to explain is it the noise a straw makes when a glass is almost completely empty (very little fluid in glass but loud noise) Other Changes Delirium Coma Circulatory - tachycardia, hypotension, cooling of extremities, cyanosis, mottling of skin (marble looking), loss of peripheral pulses Loss of sphincter control & decreased urine output Inability to close eyes Hallucinations involving previously deceased friends or family Not responding to verbal or visual stimuli Reaching up towards the ceiling or staring past you Mottling of the Skin Drooping of nasolabial folds. (A) Nasolabial folds are the skinfolds that run from the nose to the corners of the mouth (arrow). (B) In the last days of life, drooping of nasolabial folds may be noted, and they become less prominent because of the loss of facial muscle tone. The face appears to be more relaxed. Nursing Interventions: Physical Domain Functional Decline Equipment – does patient need a commode, walker, special mattress, chair cushion If bed-bound, scheduled turning and care of bony prominences to prevent skin breakdown Personal hygiene – if at home, who will be helping with bathing, toileting and personal care Medication Management Review medications to assess which are non-essential Consider route of medication if no longer able to use oral route Consider sublingual, subcutaneous, buccal (rectal used less) Transdermal may be necessary but absorption reduced when patient cachetic or circulation decreased Pain Management Assess if patient was previously taking pain medications In some instances, pain medications will be started when patient did not have pain in the past Oral route to subcutaneous route (knowing conversions) Subq route using a lock – consider abdomen for absorption or area where it won’t get dislodged Continuous subcutaneous infusion pumps Other sites - gastrostomy tubes, transdermal, IV, buccal Dyspnea Opioids, as discussed in symptom management section Ensure opioids are continued at appropriate dose if patient loses oral route No oxygen required if patient not hypoxic Use of fan Positioning Assess for anxiety or spiritual distress Delirium May appear different at EOL Hallucinations and seeing deceased loved ones Is person agitated or are they peaceful but disengaging and seeming to be ‘between two worlds’ Important to manage this symptom (see symptom management section) as it can appear suddenly near EOL Anxiety & Agitation Consider death anxiety and unresolved issues or unfinished business Estrangement and need for forgiveness See symptom management section for important assessment and interventions Total Pain assessment is essential Nursing Interventions: Other Domains  The Vigil “the act of being with another toward death… significant others gather by the bedside of dying individuals in the weeks, days, or hours prior to the death event. It is not unusual for nurses to be present, bear witness, and share in this human experience.” (Fleming-Damon, 2016) Family at the bedside – group vs. individual visits Recommending the family go home Explore how that would affect them Know the individual and what brings them comfort Prayer, music, quiet, bright sunlight, subdued lighting Psychosocial Care Responding to questions and concerns In each setting, check on the patient and family regularly Remember to involve the Interprofessional Team to ensure all domains are addressed Dignity Turning, bathing and care of hair and skin Privacy and respect Talking to patient even when they appear unresponsive Role modeling for family who wish to participate Spiritual Care The most important thing is to ask Do not make assumptions Involve the person’s own source of spiritual strength if possible Improvise traditions if the person is not in their own home Loss and Grief How can family participate? Different types of grievers and anticipatory grief Some may want to care for their loved one Others may be better at managing practical tasks and preparation Communication and Being Presencing Calming and comforting Focus on communication and care, rather than tasks Stop before you enter room or home to ground yourself and be fully present Role model how to speak to and touch patient Use a quiet, soothing voice and provide a dignified setting Reaffirming and Reassurance You may need to repeat the signs to several family members or to someone who is needing reassurance Use the person’s name and ask about memories and happy times they’ve had together Would the person like music, or do they prefer quiet, the news, etc? Time of Death Time of death – rituals or ceremonies Allowing the family time but also checking in on them, as they may need guidance Does the family know who to contact? Special touches for memories – have you experienced any? Time of Death Pronouncement Take a few minutes to be present, hold patient’s hand or touch arm prior to proceeding Call the patient’s name and gently touch/shake shoulder of patient; confirm that patient does not rouse to these stimuli Look for absence of spontaneous respirations (at least one minute) Feel for absence of wrist and carotid pulses (at least one minute) Listen for absence of breath and heart sounds Look at pupils; size and position (should be fixed and dilated; do not respond to light) Time of Death Inform family that patient has died and be fully present Ask about rituals and if they need anyone called Allow family time but let them know you will be checking in with them Death certificate by physician or NP who has been caring for the patient Calling the funeral home Honour Guard Communication with the family  CHPCA Model of Care CHPCA, A Model to Guide Hospice Palliative Care, Ottawa, ON, Canadian Hospice Palliative Care, 2013 Bereavement Care A pause and reflection at time of death – a sacred time Honour guard – improvise, depending on setting Resources for the family Bereavement follow up  The Case of William William is experiencing decline as his cancer advances – His PPS is now 40%. His pain is managed on sustained release hydromorphone and gabapentin; he has had a celiac plexus block. At today’s visit, William reports that he is beginning to have difficulty swallowing; he continues to take his meals in his room as it is too tiring to go to the dining room. He agreed to a visit from the Rabbi. His wishes are to spend his last days at the retirement home and to reconcile with his daughter. William’s son Gabriel has taken a compassionate leave from work so that he can spend time with William. Gabriel has expressed to William that he does not want to see his sister. Gabriel has been sleeping at the retirement home on most nights. He is becoming tired and feeling conflicted – “My wife is doing everything at home, but I want to be here when he dies.” Gabriel asks the nurse, “What should I expect to happen as Dad gets closer to death? How much longer do you think he has?” Next Week – Quiz #3 November 14, 2024 Online quiz through Brightspace – 20 minutes for 15 questions Week 8 - Loss, Grief & Bereavement Week 9 – Practicalities