Terminal Phase of LifeTop
The final stages of life may last from several hours to several days (unless death is sudden, eg, from cardiac arrhythmia, hemorrhage, or pulmonary embolism). It is important to recognize that dying is an active process. As the underlying disease progresses and organs shut down, new symptoms arise and changes in therapy are needed. When the cause of death is progression of a complex terminal illness, such as heart failure, patients may need a more frequent reassessment than someone in whom the goals are curative.
As an individual nears death, some common signs and symptoms may be present:
1) Alterations of mental status leading to fatigue, drowsiness, and decreased levels of consciousness. Delirium and even agitation may occur.
2) Decreased perfusion leading to cool extremities, mottled skin tone, and decreased urine output.
3) Changes in respiratory control leading to fluctuation in the patient’s breathing pattern. Apnea is common and can be present paroxysmally in the last days of life.
4) Muscle weakness and incoordination leading to inability to swallow. Oral secretions begin to pool in the posterior pharynx and vibrate with respirations. This is commonly referred to as the “death rattle.” It is not painful to the patient but can be distressing to those around.
5) Loss of the ability to control body temperature, which can result in fever in the last hours of life. This fever does respond to antipyretics and is associated with absence of an acute infectious source.
Principles of Terminal CareTop
The primary goal of terminal care is to provide comfort for the patient and family or caregivers during this very difficult time. The definition of comfort and its exact needs will differ for every patient and family. For most, comfort includes freedom from symptoms such as dyspnea and pain. For some, comfort includes psychosocial and/or spiritual support. For others, comfort includes attention to legal and financial documents. Health-care professionals should explore the needs of each patient and family to insure they are addressing their expectations. This is best done in the setting of a multidisciplinary team.
In general, quality end-of-life care includes:
1) Adequate management of symptoms such as pain, fear, and discomfort.
2) Prevention of unnecessary prolongation of the dying process.
3) Clear, coherent, sensitive, and compassionate communication to facilitate meaningful decision-making in the least stressful and burdensome manner.
4) Focus on patient-centered care such that the patient and/or family/substitute decision-makers are actively involved in decision-making and planning.
5) Opportunity to focus on personal relationships while reducing burdens on others.
6) Access to care, support, and resources to provide an optimal quality-of-life experience as defined by the patient.
Interventions and Care ManagementTop
1. Pain, suffering, and symptom management: End-of-life can be associated with a considerable burden of physical symptoms. Every effort must be made by the patient’s physicians and care team to relieve these symptoms.
It is sometimes necessary to perform investigations (eg, blood work, radiographs) before one can control new symptoms. Patients and their caregivers should be gently reminded that the testing is not designed for cure but to help identify the cause of a distressing symptom. The extent to which the patient is subjected to testing, interventions, and other active therapies should be individualized based on the needs, goals of care, location of care, and life expectancy. In the last hours and days, it may be appropriate to simply conduct a trial of medications for symptom management based on the physical examination and not subject the patient to testing.
1) Pain control should continue as initiated prior to transition into the terminal phase. Route of administration of medications should be changed from oral to subcutaneous (preferably) or intravenous when swallowing is not possible. Assessment of pain control should focus on the presence or absence of grimacing, calling out, or moaning as the patient becomes unable to communicate.
2) Dyspnea should be managed with opioids (similar dosing to that used for pain management). Opioids reduce the sensation of work of breathing. In small doses that are titrated as needed to comfort, opioids have not been shown to cause respiratory depression or hasten death. Dyspnea that is resistant to opioids should be treated with a combination of opioids and benzodiazepines (eg, midazolam 0.5-2 mg subcutaneously or intravenously every 4 hours).
3) Delirium at end of life should be treated for comfort of the patient and family. Antipsychotics are the first-line therapy for terminal delirium (haloperidol 0.5-2 mg orally/subcutaneously/intravenously every 8 hours; quetiapine 12.5-50 mg orally every 12 hours). Delirium resistant to antipsychotics or at high risk of causing harm should be treated with benzodiazepines for their sedating properties (eg, midazolam 0.5-2 mg subcutaneously/intravenously).
4) Fever can be treated with acetaminophen (INN paracetamol) orally or rectally.
5) Oral secretions can be managed with gentle oral suctioning, frequent turning (to allow the fluids to redistribute), or anticholinergic meditations (eg, scopolamine 0.04-0.06 mg subcutaneously every 6 hours as needed). Anticholinergic medications can worsen or cause agitation/delirium and should be used with caution.
Relief of symptoms may also include minimally invasive procedures such as insertion of a nasogastric tube for management of nausea and noninvasive ventilation for dyspnea. More invasive procedures, such as gastric tubes for relief of refractory vomiting (used in ovarian and pancreatic cancers) or pericardial windows, may be considered depending on life expectancy and individual preferences. When initiating invasive and minimally invasive procedures, it should be clearly explained that it is for symptom control and if it proves more uncomfortable than beneficial, medications for symptom relief should be maximized and invasive techniques discontinued.
Early consideration of consultation with specialty services to address difficult instances of pain, anxiety, breathing, confusion, or gastrointestinal complaints must be a priority for health-care providers. Patients with refractory distressing symptoms may need assessment and consideration of palliative sedation.
2. Nonphysical symptoms: Nonphysical symptoms are common sources of suffering at the end of life. These may include (but are not limited to) grief, financial concerns, spiritual struggles, anxiety, existential suffering, and depression. Nonphysical symptoms must be assessed and treated with the same intensity as one would in the case of physical symptoms. Early consideration of consultation with specialty services (eg, palliative care, spiritual care, social work, psychology, psychiatry, bioethics) must be a priority for health-care providers.
3. Personal care: Care of the actively dying patient should include routine personal care, with hand and face washing and bathing. For highly symptomatic patients, even bathing can be uncomfortable due to pain, dyspnea, or agitation. Scheduling bathing around medication administration, availability of additional bedside staff, and family visits may help to comfort patients.
4. Prevention of bedsores: Patients at high risk of bedsores, such as those with edema, cachexia, incontinence, and obesity, need close monitoring of skin integrity. Early consideration should be given to frequent repositioning and use of friction-reducing mattresses. Patients who develop bedsores should be treated in the same fashion as patients not at the end of life. A wound care specialist should be consulted when appropriate.
5. Mouth care: Patients at the end of life require aggressive mouth care to prevent dry mouth, chapped lips, and to reduce the risk of aspiration pneumonia. Limited evidence in patients with cancer and stroke suggests that maintaining a moist mouth reduces the sensation of thirst.
6. Bowel and bladder care: Constipation at the end of life is common. Even when not eating, the body produces cellular waste that is excreted through the gastrointestinal tract. At the end of life, the patient should have a small to moderate bowel movement every 2 to 3 days. Oral laxatives should be used when the patient is able to swallow. For those unable to swallow, a suppository should be available every 2 to 3 days to ensure constipation does not develop.
If the patient is able to void and tolerates personal care, a Foley catheter is not needed. However, catheters provide protection from skin breakdown, improved pain control in patients who have pain on turning, and relief of discomfort for patients with urinary retention, and should be considered in these situations.
7. Monitoring of vital signs: At the end of life, it may not be necessary or appropriate to monitor all vital signs. However, in some situations provision of comfort requires monitoring of certain vital signs. Elevated temperature can easily be treated with antipyretics. Dyspnea can be treated with opiates and benzodiazepines. Patients who have a tendency toward symptomatic rapid heart rhythms may need to have their heart rate checked regularly to prevent chest pain or dyspnea. It is appropriate to consider what would be done for abnormal readings prior to making the decision to discontinue vital signs monitoring. Selective ordering of vital signs in every case is advised.
8. Artificial hydration and nutrition: Removal or withholding of artificial hydration and nutrition can be an emotionally laden topic for patients and families. However, in the very last hours and days of life, artificial hydration and nutrition can cause discomfort. As the body becomes less able to process foods and fluids, enteral nutrition can cause bloating, vomiting, and aspiration. Artificial hydration leads to peripheral and pulmonary edema as cardiac output decreases. Due to the sensitive nature of these conversations, it is advised that they be carried out over time. Some families will choose to continue feeding or hydrating despite the lack of evidence for improved life expectancy or increased energy. In such cases, it is important to identify situations in which the intervention will need to be stopped to prevent further harm (eg, aspiration of feeds leading to respiratory failure).
9. Grief: Grief is a natural response to real or threatened loss. The nature of the loss can have a profound impact on the grieving and bereavement period. While grief cannot be alleviated completely, it can be tempered by providing support and control during illness and death. Allowing families and friends the opportunity to express their impressions of the patient’s comfort and to work with the health-care team to address concerns and fears helps them grieve in a healthy fashion.
10. Organ and tissue donation: The discussion of organ and tissue donation with dying patients and their families is becoming a more standard part of care. This must be done in a sensitive manner that both respects the patient and the family in a difficult time while also ensuring that they are not denied the opportunity to donate due to not considering it as an option. Many patients and their families take some solace in the fact that some good comes out of the death. In Ontario, Canada, it is mandatory to report all actual or impending deaths to the Trillium Gift of Life Network (TGLN), which assesses with the health-care team whether the patient would be eligible for donation. This avoids offering donation as an option in ineligible patients and also allows trained experts from TGLN to approach the patient or family if they are eligible to discuss it. Notification in advance of death helps facilitate this process, but the TGLN does not approach families prior to death without the consent of the clinicians involved. Consent for donation is obtained in 68% of situations when the discussion is led by TGLN facilitators compared to 15% when done by the hospital staff.Evidence 1Low Quality of Evidence (low confidence that we know true effects of the intervention). Quality of Evidence lowered due to the observational nature of data and single geographic area observation. Trillium Gift of Life Network. https://www.giftoflife.on.ca/en/professionals.htm. Accessed January 27, 2017. Having a TGLN facilitator handle this aspect of end-of-life care also allows the hospital staff to remain without perceived conflicts of interest and focus on the direct care of the patient. Most physicians think of organ donation in the setting of brain death given the coordination required to harvest organs. However, tissues like skin, bone, heart valves, and eyes have a longer viability window after death and can readily be harvested on the basis of more traditional criteria, making this a relevant consideration for all dying patients.
Diagnosis of DeathTop
Death is defined as the irreversible loss of bodily functions that support a living organism. In the majority of cases (when respiratory and circulatory functions are not artificially supported), the traditional criteria of death apply.
Brain death is defined as the irreversible loss of brain stem functions needed to support a living organism. Brain death is important in the setting of organ donation and when artificial ventilation is used.
The traditional criterion for the diagnosis of death involves identification of:
1) Cessation of circulatory function: Absence of pulse on large arteries (carotid arteries) and no heart sounds on auscultation for ≥2 minutes. Difficulties in palpating the pulse may be caused by advanced atherosclerosis or by the presence of stents in the carotid arteries. If the examination of pulse or auscultation of heart sounds is too short, it is possible to overlook preserved cardiac function in patients with profound bradycardia.
2) Cessation of spontaneous respiratory function: Auscultate and observe the chest for 1 minute. An insufficiently long observation of breathing in patients with irregular and slow respirations in the course of acid-base disturbances, drug poisoning, encephalitis, brain tumors, and brain edema can miss extreme bradypnea. Contractions of the neck and chest muscles can imitate breathing even for several minutes after the cessation of circulatory function; thus, observation must be combined with auscultation.
3) Dilated pupils unresponsive to light: Assess both eyes, as the lack of pupillary response to light may be a result of iris trauma, diseases of the retina and optic nerve, treatment with mydriatics, and presence of ocular prosthesis.
Death can be diagnosed in a cadaver at subzero temperatures in the presence of postmortem lividity, rigor mortis, and body decomposition. If you approach a hypothermic person without circulatory function and cannot confirm the above criteria, start and continue resuscitation (see Cardiac Arrest) while warming the patient. Death can be diagnosed when resuscitation is ineffective in spite of normalizing the body temperature. In some situations, achieving normothermia may be impossible and death will have to be declared despite ongoing low core body temperatures.
When diagnosing death on the basis of postmortem lividity, it is important to remember that cyanotic discoloration of the skin, which develops in advanced congestive heart failure, may be mistaken for postmortem lividity (cyanotic areas blanch under pressure, postmortem lividity does not).
A pacemaker may continue to provide electrical stimulation for a short time after death. This ongoing electrical activity will be detected on electrocardiography (ECG) but will not create a systemic pulse or systemic circulation.
This requires more rigorous testing than determination of death. It is usually done in the setting of anticipated organ donation. In Canada, criteria for determination of clinical brain death in the adult patient include:
1) Cause of death that is capable of causing brain death.
2) Absence of reversible causes of coma:
a) Untreated shock.
b) Hypothermia (<34 degrees Celsius).
c) Untreated metabolic disturbances.
d) Peripheral nerve or muscle dysfunction due to disease or neuromuscular blocking agents.
e) Central nervous system depressants.
3) Absence of brain stem reflexes:
a) Pupillary response to light.
b) Corneal reflex.
c) Gag reflex.
d) Cough reflex (use bronchial suctioning to try to elicit the reflex).
e) Oculovestibular reflex (cold calorics): With the head of the bed at 30 degrees, 50 mL ice cold water is syringed into the patient’s ear canal. Any movement of the eyes excludes neurologic death. Repeat in both ears.
4) Absence of response to stimuli in all extremities and above clavicles.
5) Absence of respiratory effort—apnea testing: In setting of normal arterial blood gas values, the patient is preoxygenated with 100% oxygen. The ventilator is disconnected, but oxygen is delivered to the patient (through an endotracheal tube or tracheostomy). The patient is monitored continuously for respirations. Arterial blood gas measurement is repeated at 10 to 15 minutes, and the patient is reconnected to the ventilator. Apnea is confirmed if partial pressure of carbon dioxide in arterial blood (PaCO2) is >60 mm Hg, has risen >20 mm Hg above baseline, and pH is ≤7.28. Testing is aborted if the patient becomes hemodynamically unstable.
6) Two physicians who are fully licensed for independent practice must confirm that the above criteria are met. These physicians must not have a relationship with the potential organ recipients. They may perform the examination simultaneously or separately, although the apnea test is usually only done once with both physicians present.
7) Ancillary testing to confirm lack of cerebral blood flow is necessary only when any of the above physical examination steps cannot be completed or interpreted. Radionucleotide imaging, 4-vessel cerebral angiography, computed tomography (CT), and magnetic resonance angiography (MRA) are acceptable modalities of ancillary testing.