Last Days and Hours

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 more frequent reassessments 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. In the past, end-of-life respiratory secretions were 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 responds to antipyretics and is associated with absence of an acute infectious source.

Principles of End-of-Life CareTop

The primary goal of the last stages of end-of-life care is to provide comfort for the patient and family or caregivers during this impactful 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: The 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.

Despite conservative goals of care, it may sometimes be prudent to perform simple investigations (eg, blood tests, radiographs) to best guide symptom management. Discussion with patients and their caregivers can determine if this is appropriate. Overall, however, treatment should be individualized based on the needs, goals of care, location of care, and life expectancy. In the last hours and days it is usually most appropriate to simply conduct a trial of medications for symptom management based on clinical scenario.

1) Pain control should continue as initiated prior to transition into the terminal phase. The route of administration of medications should be changed from oral to subcutaneous (preferably) or IV (less preferred) 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 IV every 4 hours).

3) Delirium at the 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 or subcutaneously every 4-8 hours; quetiapine 12.5-50 mg orally every 12 hours). Patients with delirium resistant to antipsychotic agents or at high risk of causing harm should be treated with benzodiazepines for their sedating properties (eg, midazolam 0.5-2 mg subcutaneously).

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 [hyoscine hydrobromide] 0.3-0.6 mg or glycopyrrolate 0.2-0.4 mg [maximum, 1.2 mg/d] subcutaneously every 4 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 the management of nausea and noninvasive ventilation for dyspnea. These more invasive options should be considered only if symptoms are refractory to all less invasive pharmacologic and nonpharmacologic therapies.

Early consideration of consultation and collaboration with specialists who can address difficult instances of pain, anxiety, dyspnea, confusion, or gastrointestinal complaints must be a priority for health-care providers. A small number of patients may encounter refractory distressing symptoms necessitating assessment and consideration of palliative sedation.

2. Nonphysical symptoms: Nonphysical symptoms are a common source 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 consultation and collaboration with expert clinicians in other disciplines (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 improve comfort.

4. Prevention of bedsores: Actively dying patients are at high risk of bedsores, especially those with the additional burdens of edema, cachexia, incontinence, and obesity. Close monitoring of skin integrity is imperative. Early consideration should be given to frequent repositioning and use of friction-reducing mattresses. Patients at end of life 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 and 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 consuming food, 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 1 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 is usually not necessary nor appropriate to monitor all vital signs. However, in some situations provision of comfort might require 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: The eventual but normal inability to take in food or water at the end of life can be challenging for patients and families. Artificial hydration and nutrition at the end of life do not prolong life and do not provide improved quality of life. In the very last hours and days of life artificial hydration and nutrition can cause discomfort to the patient. 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. Careful ongoing conversations to discuss this normal process with patients and families are vital to their ability to grow in their understanding and acceptance of this situation. Some families, despite this information, preparation, and support, may wish to continue preexisting 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 loss can have a profound impact on the grief process and experience of bereavement. Allowing families and friends ongoing support and opportunity to express their impressions of the patient’s comfort and to work with the health-care team to address concerns and fears can help 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 standard part of care. This must be done in a sensitive manner that both respects the patient and family in a difficult time while also ensuring that they are not denied the opportunity to donate. For many patients and their families organ donation can provide a positive orientation to a sad time. In Ontario, Canada, it is mandatory to report all actual or impending deaths in the hospital to the Trillium Gift of Life Network (TGLN), which assesses whether the patient would be eligible for donation. This avoids offering donation as an option in ineligible patients and also allows trained experts from the 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 with 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 August 25, 2019. Having a TGLN facilitator handle this aspect of end-of-life care also allows the hospital staff to remain free of 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. However, many organ donation programs are beginning to develop protocols for organ donation in the setting of circulatory/cardiac death, such as when life sustaining therapies are withdrawn in the setting of critical nonneurologic illness. Additionally, tissues such as skin, bone, heart valves, and corneas 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.

11. Diagnosis of death: see Diagnosis of Death.