SIGNS AND SYMPTOMS OF APPROACHING DEATH Policy # H:5-008.1 Comfort Measures for s/sx of approaching death (informational sheet) is provided in the Admission packet. SIGNS AND SYMPTOMS OF APPROACHING DEATH

Signs and symptoms of approaching death – policy # h:5-008.1 Purpose: To provide guidelines for recognizing the signs and symptoms of approaching death and taking appropriate action Policy: A family/caregiver instruction sheet will be provided to hospice patients and family/caregivers describing signs and symptoms of approaching death and appropriate actions to take The Signs and Symptoms of Approaching Death handout can be found in the Family Guide to Hospice (in the final stages of approval) and in the admit pack; I have provided for each of you, a copy of “comfort measures for s/sx of approaching death” and the handout entitled “The Natural Dying Process” for your review and education. Please note that our education department also has extensive education (handouts) on common s/sx of end-stage disease that outlines each specific disease process (such as): Cardiac / Pulmonary, Cancers, Alzheimer’s, etc. Please contact our Education department at ext 11524 to obtain a copy. (In Jodi’s orientation manual).

Definition of Terms Catheterization – insertion of tube into patient’s bladder to facilitate removal of urine Pulmonary Edema – Fluid accumulation in the tissues of the lungs Terminal Anguish – state PRIOR to death where patient is unable to suppress or repress painful, unresolved psychological issues Terminal Restlessness – Prior to entering semi comatose state patient becomes restless, confused and possible seizure activity Hello, welcome to Ambercare. We are excited to have you on board with us. Let’s start out by reviewing a common list of terms associated with EOL care. The above processes may or may not be present during the last stages of the death/dying process. Let’s turn our attention to What the death and dying process is all about….

What is death all about? Each of us will face death sooner or later Less than 10% will die suddenly More than 90% of us will die due to a prolonged illness There is NO typical death experience. Each person dies in their own way, own time, and their own cultural, belief system, values, and unique relationships with others The time of death generally cannot be predicted The final days and hours before a patient dies is the last opportunity for growth and development to occur in the pt/family unit The final hours allow for patient/family to say goodbye and complete end of life closure Emphasis should be placed on facilitating a comfortable death that honors patient/family choices It is important to explore your “own” feelings regarding the death experience. An important question to answer is “what does it feel like to be with someone dying.” How do I, as a clinician feel about death. Does my own belief or value system get in the way of the patient’s/families wishes? Will I truly be “present and bear witness” to such a tremendous privileged event? Dying is a physical, psychological, social, spiritual event….let’s take a look at what this statement means….

Dying is a physical, psychological, social, spiritual event Patient/family must continue to be seen as a collaborative unit Emphasis must be placed on optimizing patient comfort, dignity, choice, acceptance, final tasks, and life closure All aspects of care need to intensify in order to minimize suffering The interdisciplinary team must remain focused in order to: Help patient achieve a dignified death Identify emerging problems Help family deal with immediate care needs up to and including moment of death as well as after death event Arrange for privacy and intimacy if possible What do we know about “preparing for Death?” Let’s explore….

What do we know about “preparing for death What do we know about “preparing for death?” – Active Dying: Last few weeks of Life The time cannot be predicted Some patients instinctively know WHEN death will occur S/sx only serve a s guideline, not all patients experience all symptoms and the s/sx do not necessarily occur in sequence The dying process is a natural slowing down of physical and mental processes Can occur over days or weeks or may be present only hours/minutes prior to death

Psychological and spiritual Signs of Active Dying Fear of dying Fear of abandonment Fear of the unknown Dreams and visions Withdrawal Increased focus on spiritual issues Terminal anguish Some or all of these may be present. A great resource that you may want to jot down is Ira Byock, MD – he has published extensively on this subject matter….

Managing Physiologic/Emotional Changes Increased weakness/fatigue Loss of appetite, physical wasting Nausea and vomiting Dehydration and decreased fluid intake Changes in renal and bladder function Changes in bowel function Pain Managing the physical/emotional/spiritual/psychological signs of death requires an interdisciplinary approach; Utilize the expertise of your team members to help formulate the best “plan of care” for your patient and family/caregivers. Medications and other forms of therapies may be required.

INCREASED WEAKNESS AND FATIGUE GENERALLY progresses to point that patient is unable to move muscles and joints independently Turning may be painful. Head may need to be supported and/or positioned for patient Increased need for care ADL’s Turning and movement

Loss of appetite, physical wasting May begin earlier in the dying process. However, tends to intensify during active phase of dying Family members especially need support at this time. Want to continue to feed and it is difficult for them to “let go” Help family find alternative ways to care for their loved one Feeding is potentially dangerous at this time as it may lead to aspiration Anorexia may be a protective mechanism of they body. It results in a chemical imbalance (ketosis) which, in turn, creates a greater sense of well-being in the patient as well as a diminished perception of pain

Nausea and vomiting Along with anorexia may come nausea and vomiting This needs to managed aggressively to promote and maintain patient’s comfort Again, medication management (such as antiemetic's) may serve to be a useful intervention.

Dehydration/decreased fluid intake Like food, your patient usually stops drinking fluids before the phase of active dying Giving fluids can prevent renal failure with subsequent accumulation of opioid metabolites, electrolyte imbalance and some elements of confusion and restlessness. HOWEVER, as death approaches, aggressive hydration therapy can actually hasten death due to pulmonary edema, worsened breathlessness, and increased oral/bronchial secretions Give oral mucosa care every 15 to 30 minutes to minimize sense of thirst and avoid bad odors or tastes and painful cracking; use lip balms Educating and partnering with your patient’s family members/caregivers is key to carrying out the best plan of care for your patient. Getting them involved (providing frequent oral care for example) can help them feel as though they haven’t lost ALL control of their loved one’s impending death.

Changes in kidney and bladder functions Urine output usually diminishes gradually in response to decreased food and fluid intake Incontinence and/or retention may also occur. Retention may require catheterization to promote comfort

Changes in bowel function Constipation may continue as a problem due to decreased food intake as well as decreased activity of the gut due to continued pain medication routines Impaction may need to be addressed if contributing to marked patient discomfort

Pain Like other symptoms, pain must continue to be managed with the same vigor as at any point in the illness Although pain intensity may decrease and/or may not be self-reported due to altered states of consciousness and/or metabolic changes, pain therapy may need to e adjusted to accommodate for changes in LOC or RR If oral route becomes unavailable, other routes (rectal/subcutaneous) should be considered.

Last hours of life Semi comatose state Impaired heart and renal function Respiratory dysfunction Neurologic dysfunction As death approaches, the heart, lungs and nervous system begin to fail. Primary, irreversible organ failure is occurring. The patient becomes semi comatose, following s/sx become evident as death approaches.

Semi comatose state Eyes become sunken and glazed; often are half open Senses are generally dulled except hearing may not be lost; sensitivity to light may remain Ability to move decreases, beginning in the legs and progressing to the arms Body becomes still and joints painful when moved Only essential medications for symptom management are given

Impaired heart and renal function Cardiac output decreases with a corresponding decrease in peripheral and renal perfusion Pulse rate increases initially (compensatory mechanism – need more volume) and then weakens and becomes irregular. Radial pulse may be so faint – nonpalpable BP decreases Peripheral cooling (lack of perfusion) bluish coloring and mottling of skin noted Patient may perspire; peripheral edema may develop Body temperature may increase due to possible infection and/or increased tumor activity in cancer patients CO = HR x SV (generally 5-6 liters come in out of the heart every minute). Pulse rate may increase (tachycardia) initially due to compensatory mechanism – dry intravascular bed, attempting to bring up BP because of low volume via tachy syndrome.

Respiratory dysfunction Breathing may become shallow or labored Respiration may increase in rate and then decrease, (compensatory mechanism) increase in rate and then slow again Secretions may increase; resident may have difficulty coughing and clearing secretions and swallowing effectively Feelings of “lack of air” and breathlessness may increase as death approaches Death “rattle”: Terminal congestion occurs due to changes in respiratory rate and inability of patient to clear secretions It is important not to use the term “death rattle” around family/caregivers – the “noise” itself is traumatic enough and very distressing to family but not often not as troublesome to patient. Medication management such as anticholinergics would be useful to dry up secretions.

Neurologic symptoms Result of multiple nonreversible factors: Metabolic imbalances Acidosis Kidney failure Infection Reduce blood flow to brain Leads to “2” roads to death:

The “usual road” to death The majority of persons travel the “usual road.” They experience increasing drowsiness and eventually become unarousable. Stages are as follows: Decreasing LOC Sleepiness Lethargic Semi comatose Comatose (almost equivalent to full anesthesia) DEATH

The “difficult road’ to death Due to nervous system agitation prior to entering semi comatose state Restlessness Confusion Tremors Hallucinations Mumbling delirium Muscle jerking Seizures Semi comatose Comatose DEATH The nervous system becomes highly agitated prior to entering the semi comatose state. The following occurs: confusion and tremors; Experiences of hallucinations and mumbling delirium may occur. May progress to muscle jerking and seizure activity before progressing to coma and death.

Signs that death has occurred Absence of heartbeat, respirations Fixed pupils Release of stool and urine No response to stimulation Coloration of patient turns to a waxen pallor as blood settles/pools Body temperature drops Muscles, sphincter relax Eyes may remain open Jaw falls open Body fluids may be heard trickling internally

What to do when death occurs Care shifts from resident to family/caregivers KNOW who to call; goal is NOT to call 911 on a routine basis Follow traditions, rites, rituals; prepare body accordingly Know whether resident has requested organ donation – how to proceed Follow procedures as outlined in Ambercare’s Policy and Procedure Initiate bereavement support Remember every patient and family are unique!

Last thoughts….. Stay with me…. Walk with me…. Help me to “fear no evil”…. Comfort me…. Facilitate my closure….. Help me leave my legacy in peace….

References: Various resources incorporated into this presentation: Adapted from: - HOM/IOG: Barker, C., & Foerg, M., - Hospice of Michigan