Care of the dying patient generally refers to care in the last days or hours of life. The goals of care during the last hours and days of life are to ensure comfort and dignity. Good palliative care does not hasten death.
In humanitarian settings, where healthcare providers may not have expertise in palliative care, identifying when patients are at this stage of life can be challenging. In addition, during this time, physical symptoms can be difficult to control; the best way to ensure they are well managed is to anticipate the symptoms and develop a management plan.
This chapter will discuss the key physiological changes, communication, and symptom management considerations required to provide care of the dying patient in humanitarian-crisis situations. While providing optimal care for dying patients in these situations may be challenging, a clear understanding of key components of good care can guide clinicians to prioritize their efforts.
Recognizing When Death Is Imminent
When death is approaching, most individuals look quite similar, despite their underlying medical condition. Observations that may help to identify patients who are approaching end of life include the following:
• Very tired and weak, spending the majority of time sleeping or lying down
• Little or no oral intake and difficulty swallowing
• Altered level of consciousness—confused, agitated, restless, or drowsy
• Changes in pulse, blood pressure, and breathing, cool and mottled extremities
• Decreased urine and stool output
Children are often more resilient and may survive what appears to be the imminently dying phase, because they have less age-related degeneration of vital organs. Patients with malnutrition will have a more rapid progression to end of life.
Predicting how long a patient will live is very challenging; changes in the patient’s condition should guide prognostication. If changes are:
• Hourly, death is expected in hours to several days.
• Daily, death is expected in days to several weeks.
• Weeks, death is expected in weeks to months.
• Communication and clear decision-making from healthcare providers
• Adequate pain and symptom management
• Strengthening relationships with loved ones (resolving conflicts, saying goodbye)
• Preparation for death
Completing these actions may be challenging for clinicians in humanitarian crises. In these settings, when staff might be limited, having a nonmedical member of the healthcare team (such as a patient guide, community health worker, or other staff member) stay with the family can be critical and reduce the family’s demands on the healthcare team.
It is important to provide clear and prompt information about prognosis to the patient and family. When speaking about how much time is left, one should provide a time range, since a precise answer is likely to be wrong and may cause families to lose trust in the clinical team (Box 9.1). Box 9.2 provides suggested language for these conversations.
Family Meeting Tips
• Sit down and give the patient and family your undivided attention for 5 to 10 minutes, in the most quiet and private location possible and practical for the setting.
• Be honest about how much time you have: “I would really like to spend more time with you, but unfortunately, I only have 10 minutes, so what are the most important questions you have for me at this time?”
• Tell the family when you will be able to return to see them.
• If possible, involve a nurse and psychosocial counselor in the meeting, who can continue to provide support after the meeting.
Symptom Management Considerations in the Last Hours and Day
Guidelines and standardized order sets are recommended to ensure consistent treatment with appropriate doses of medications and to enable bedside clinicians to initiate care. See Box 9.3 for an example.
Adapted from Textbook of Interdisciplinary Pediatric Palliative Care.8
Ensure that the healthcare team (or family) has the following medications available to be given immediately for severe symptoms (such as pain, dyspnea, and agitation or restlessness) at the end of life.
• Subcutaneous/Intravenous (SC/IV) morphine (or another opioid, if available)
• Rectal (PR) diazepam (or midazolam SC/IV if available)
The goal at this stage is comfort, not to reverse the underlying cause of the symptom. Discontinue vital sign assessments, pulse oximetry, nonessential medications (including IV fluids), and laboratory and radiological tests.
Do not be afraid to rapidly increase the dose of morphine or other medications in order to achieve symptom control. For patients who experience refractory symptoms, palliative sedation can be considered (full details are beyond the scope of this chapter).
The SC route is useful in this phase of illness in order to manage symptoms quickly, without the trouble of needing to maintain IV access. Insert a butterfly needle and secure it in place. This can be kept for up to 7 days (provided the SC site does not have any significant redness or tenderness). Medications that can be given SC (same dose as IV) include the following. See also Chapter 13 for complete details and a compatibility chart.7
• Opioids: morphine, hydromorphone, fentanyl, methadone, oxycodone, diamorphine
• Sedative-hypnotics: midazolam, clonazepam, phenobarbital
• Antiemetics: haloperidol, metoclopramide, levomepromazine (methotrimeprazine)
• Antisecretory agents: hyoscine butylbromide, hyoscine hydrobromide, glycopyrrolate. octreotide
• Antihistamines: cyclizine, promethazine
• Miscellaneous: dexamethasone, methylnaltrexone, naloxone
Escalating Pain, Dyspnea, and Agitation
These are three common symptoms that often require intensive treatment near the end of life. The use of rapidly escalating doses of opioids is appropriate to manage pain or dyspnea and, when used by trained providers, will not cause respiratory depression or addiction or hasten death (see Box 9.3).
To facilitate rapid titration of medications, ensure that clinicians are readily available and that medications, including opioids, are available at the bedside for rapid administration. Refer to Chapters 4, 5, and 7 for complete management.
Delirium at this stage is generally due to multiple conditions, which are generally irreversible, such as the underlying disease process, metabolic and electrolyte imbalances, liver and renal failure, infection, and hypoxia. Urinary retention is a potentially reversible cause, which can be managed with insertion of a Foley catheter. Refer to Chapter 7 for guidelines in treating delirium.
Weakness and Fatigue
This condition is expected and will increase as the patient gets closer to death. Do not give stimulants (methylphenidate, steroids) to try “to wake the patient up” at this stage of illness. Ensure that the patient is gently turned and repositioned, to avoid pressure ulcers (if death is imminent, this is not relevant).
Counsel the Family
Allow the patient to rest, as weakness and fatigue are a normal part of the dying process. The patient will have a limited amount of energy, so help the patient prioritize how they want to use their energy.
Some patients may experience a brief period of increased energy and mental alertness prior to their death. If this occurs, it should be used for quality interaction with loved ones.
Decreased Oral Intake
Reduced oral intake is a normal part of the dying process; patients who are close to dying do not feel hunger or thirst. Fluids and foods should be provided if desired by the patient. Do not provide parenteral fluids since research shows that this does not improve symptoms, quality of life, or survival for palliative care patients who cannot drink.9
Counsel the Family
Forcing a patient to eat or drink may be dangerous because of the risk of aspiration. Providing IV fluids will not prolong life or improve comfort, but it can cause distress from edema and dyspnea. Providing oral care by swabbing the mouth with water and keeping the lips moist with petroleum jelly (Vaseline) or lip balm is recommended.
For families who are struggling with stopping (or not starting IV fluids), a trial of 24 hours of IV/SC fluids may be offered. Discuss with the family and agree on the goals of the therapy. Prior to starting fluids, reassess daily; if the patient is not improving, then discontinue fluids.
Breathing will change as the patient approaches end of life, with breathing becoming slow and shallow or rapid and shallow. Periods of apnea or increased work of breathing are common but do not necessarily indicate dyspnea, and need not be treated unless it is distressing to the patient.
Patients often have impaired ability to swallow at the end of life and cannot clear secretions. These secretions can accumulate and lead to gurgling or rattling sounds. This most often occurs when the patient is only minimally conscious or unconscious and does not cause the patient any distress.
Position the patient on their side with the upper body elevated to allow secretions to passively drain out of the mouth. Reduce or stop artificial (IV) fluids or nutrition (IV or NG), since this will worsen this symptom.
Suctioning is not usually helpful and may be distressing to the patient. Consider suctioning only if thick mucus or blood is present in the mouth and can easily be removed with a soft catheter.
• Atropine 1% (eye drop solution), glycopyrrolate, hyoscine butylbromide, or hyoscine hydrobromide
The following medications will not work for secretions deep in the lungs (i.e., pulmonary edema or pneumonia) and are not always effective for upper airway secretions. See Chapter 13 for dosing.
Incontinence and Urinary Retention
Incontinence of urine, stool, or both is common. Keep the patient clean and dry. A Foley catheter may be helpful but is not always needed, since urine output is minimal and absorbent pads or cloth and plastic can be used.
Urinary retention may occur and should be suspected in a restless patient with a distended bladder. In this case, a Foley catheter should be inserted.
Seizures and Convulsions
Seizures can be caused by cancers (primary or metastatic), drug toxicity (e.g., pethidine/meperidine), metabolic or electrolyte abnormalities (hypoglycemia, hyponatremia, hypercalcemia), hypoxia, severe liver failure, infections of the central nervous system (CNS), or epilepsy. Treatment is comfort focused, and a full investigative workup is not necessary.
For children with a history of epilepsy, if the child can no longer swallow medications, SC midazolam or another benzodiazepine should be started.
See Chapter 13 for dosing. Corticosteroids can be considered for seizures secondary to brain metastasis, to reduce peritumoral edema.
Acute Treatment (Status Epilepticus)
• Diazepam, lorazepam, or midazolam, repeat after 5 or 10 minutes if needed.
• If these are ineffective, consider doubling the dose of midazolam or diazepam or give phenobarbital.
• This should be followed with regular phenobarbital, to prevent further seizures.
Pediatric Treatment Considerations
Parents should be trained in the use of sublingual (SL) lorazepam or rectal (PR) diazepam as abortive medications if a child is likely to have a prolonged seizure at home.Box 9.4 provides guidance on PR administration as an alternative route.
Families should be asked about their preferred location for death. Providing home-based palliative care in a humanitarian crisis is possible and, indeed, preferable, as it may relieve the burden on healthcare facilities. Several home-based palliative care services have been developed in refugee camps and other humanitarian crisis situations.10,11
For patients who wish to go home, it is very important to provide a 24-hour contact number for a clinician, since families frequently need advice about symptom management. Without telephone support, patients frequently return to the hospital when pain or other symptoms are not well controlled or they die at home with significant suffering.
Providing home visits from trained community health workers enables families to stay at home. Counseling and training for family caregivers prior to discharge is important. Box 9.5 shows a checklist for counseling caregivers preparing for death at home.12
Home palliative care team members should include the following:
• Community health workers (CHW) with training in basic home-based palliative care
• Physicians and nurses with training in palliative care who supervise and provide guidance to the CHWs and visit patients who are having significant uncontrolled symptoms
An emergency symptom management kit, kept at the patient’s home, can be used by CHW or trained family members to provide relief for acute distress in a patient at the end of life. The kit should contain the following medications:
• Morphine (or other opioid)—for pain and dyspnea
• Haloperidol—for nausea and delirium
• Hyoscine butylbromide (or other agent for oral secretions/congestion)—for secretions
• Midazolam, diazepam (or other benzodiazepine)— for seizures, catastrophic bleeding, and acute respiratory distress
A member of the healthcare team should be assigned to stay with the family to update them about what is happening, answer their questions, and provide emotional support.
Discontinuing Fluids and Nutrition
In patients who have hours or days to live, it is considered standard of care to discontinue medically administered fluids and nutrition (see section Decreased Oral Intake).
Medically provided fluids and nutrition can ethically be withheld or withdrawn if they are no longer in the best interest of the patient—for example, if they only prolong and add morbidity to the process of dying.15 Fluids and nutrition may be withdrawn from a child who permanently lacks awareness and the ability to interact with the environment, such as a child in a persistent vegetative state or children with anencephaly.
It is important to counsel patients and families that this does not mean clinicians are “giving up” on a patient or abandoning the patient but rather focusing intensely on comfort and support.
Discontinuing Ventilatory Support
It may be ethically appropriate to discontinue intensive respiratory support (e.g., noninvasive or invasive ventilation) in certain circumstances. These supports are often started when a patient’s prognosis or illness trajectory is unclear or when the patient is believed to have a reversible condition.
It may become clear that the underlying cause of ventilator dependence is irreversible. In these situations, continued ventilatory support will not provide meaningful quality of life and may prolong suffering. This act of discontinuing ventilator support (or other life-sustaining treatments) is not the same as euthanasia or medical assistance in dying.
It is essential to involve the family in the decision to discontinue ventilatory support. Involving religious or cultural leaders may also be necessary.
After discontinuation of ventilation, most patients live only minutes or hours; however, there are some patients who may live for a few days or longer. Clinicians must prepare the family for the possibility that the individual may breathe on their own, especially in pediatrics, where this is more common.16
Management: Before Withdrawing Ventilator
• Ensure that family are present, if desired.
• Turn off all monitors and alarms.
• Discontinue all other life-sustaining treatments (e.g., artificial nutrition and hydration, antibiotics, dialysis).
• Remove all unnecessary medical paraphernalia (NG tubes, IV lines, etc.).
• Allow any neuromuscular blocking agents to wear off.
• Ensure that a rapid-acting opioid (e.g., morphine), benzodiazepine (e.g., midazolam or lorazepam), and an agent to manage secretions (e.g., glycopyrrolate) are available and drawn up at the patient’s bedside.
• Give a dose of opioids and benzodiazepine prior to withdrawing the ventilator, to ensure the patient does not feel any discomfort or dyspnea.17
Process of Withdrawal
• Ensure that the patient appears comfortable.
• Withdrawal by immediate extubation is recommended.18
While this is especially relevant parents when a child dies, it can also be meaningful for families of an adult who dies. Having tangible objects to remember their loved one supports the family in their grief. This is especially important with a pregnancy or infant loss, as parents have few tangible memories of their child’s short life.
In many cultures, parents are encouraged to try to quickly forget that a child has died, but this is not recommended, as it leads to more complicated grief for parents.
Having tangible objects to remember their loved one supports the family in their grief. This is especially important with a pregnancy or infant loss, as parents have few tangible memories of their child’s short life.
Common memory-making activities that can be easily offered to families include the following:
• Photographs or videos.
• Prints or molds of hands and feet, locks of hair
• Linking objects, which provide a physical reminder of the connection between the child and loved one (e.g., a pair of special necklaces or bracelets, one of which is placed with the child and the other with the parent).
• Personal items: clothing, baby blanket, small toys, hospital bracelet, birth certificate, bassinet card.
• Memory boxes: items can be stored and looked at when desired.
Some parents may not want to keep any memory items, which should be respected. All parents should be offered memory making, since in all cultures, there are some parents who will desire this.19
It is important to express empathy with a simple statement, such as “I am sorry for your loss.” Confirm the death by physical examination (absence of heart sounds, palpable pulse, or respirations for 60 seconds). Document the date and time of death in the medical record and the cause of death.
Allow the family as much time as they desire to say goodbye and to perform any religious or cultural rituals, as permitted within the limitations of the setting.
During an epidemic (e.g., Ebola), it may not be possible to release the body to the family, so assistance from a psychologist or spiritual support person is important to support the family’s bereavement.
Supporting Staff Who Provide End-of-Life Care
Witnessing frequent suffering and death can cause staff burnout, compassion fatigue, and moral distress. Chapter 17 provides more details about how to address this.
Regular support meetings create a safe space for staff to reflect and express their emotions on providing end-of-life care. Staff can reflect on the care that was delivered—what went well, what could be improved. Senior staff members should attend to demonstrate the importance of seeking support.
Commemorating the patient is also important for healthcare providers. This can be done by having memorial services, attending funeral services, or having follow-up contact with families. Letters, phone calls, or text messages from staff are deeply valued by families who often treasure the memories of this small act of kindness by staff.20
1. Pierson CM, Curtis JR, Patrick DL. A good death: A qualitative study of patients with advanced AIDS. AIDS Care. 2002;14(5):587–598. doi:10.1080/0954012021000005416Find this resource:
2. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825. doi:10.7326/0003-4819-132-10-200005160-00011Find this resource:
4. Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics. 2006;117(3):649–657. doi:10.1542/peds.2005-0144Find this resource:
5. Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994–2003. doi:10.1001/jamainternmed.2014.5271Find this resource:
6. Bernacki R, Hutchings M, Vick J, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open. 2015;5(10):e009032. doi:10.1136/bmjopen-2015-009032Find this resource:
7. Jassal SS. Basic Symptom Control in Paediatric Palliative Care: The Rainbows Children’s Hospice Guidelines. 9th ed. Bristol, UK: Together for Short Lives; 2013. http://www.icpcn.org/wp-content/uploads/2013/09/Rainbows-Basic-Symptom-Control-In-Paediatric-Palliative-Care-Ninth-Edition-PDF.pdf. Accessed June 29, 2019.Find this resource:
8. Wolfe J, Hinds P, Sourkes B. Textbook of Interdisciplinary Pediatric Palliative Care. St. Louis: Elsevier; 2011.Find this resource:
9. Bruera E, Hui D, Dalal S, et al. Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol. 2013;31(1):111–118. doi:10.1200/JCO.2012.44.6518Find this resource:
10. Doherty M, Khan, F. Neglected Suffering: The Unmet Need for Palliative Care in Cox’s Bazar. https://reliefweb.int/report/bangladesh/neglected-suffering-unmet-need-palliative-care-cox-s-bazar. Accessed April 11, 2018.
11. Pinheiro I, Jaff D. The role of palliative care in addressing the health needs of Syrian refugees in Jordan. Med Confl Surviv. 2018;34(1):19–38. doi:10.1080/13623699.2018.1437966Find this resource:
12. World Health Organization (WHO). Palliative Care: Symptom Management and End-of-Life Care—Interim Guidelines for First-Level Facility Health Workers. Geneva: World Health Organization; 2004. https://www.who.int/hiv/pub/imai/primary_palliative/en/. Accessed February 13, 2019.Find this resource:
13. Nibert L, Ondrejka D. Family presence during pediatric resuscitation: an integrative review for evidence-based practice. J Pediatr Nurs. 2005;20(2):145–147. doi:10.1016/j.pedn.2004.05.017Find this resource:
14. Jabre P, Belpomme V, Azoulay E, et al. Family presence during cardiopulmonary resuscitation. N Engl J Med. 2013;368(11):1008–1018. doi:10.1056/NEJMoa1203366Find this resource:
15. Tsai E; Canadian Paediatric Society, Bioethics Committee. Withholding and withdrawing artificial nutrition and hydration. Paediatr Child Health. 2011;16(4):241–242. https://www.cps.ca/en/documents/position/withholding-withdrawing-artificial-nutrition-hydration. Accessed July 12, 2018.Find this resource:
16. von Gunten C, Weissman DE. Information for patients and families about ventilator withdrawal #35. J Palliat Med. 2003;6(5):775–776. doi:10.1089/109662103322515310Find this resource:
17. von Gunten C, Weissman DE. Symptom control for ventilator withdrawal in the dying patient #34. J Palliat Med. 2003;6(5):774–775. doi:10.1089/109662103322515301Find this resource:
18. von Gunten C, Weissman DE. Ventilator withdrawal protocol (part I) #33. J Palliat Med. 2003;6(5):773–774. doi:10.1089/109662103322515293Find this resource:
19. Cortezzo DE, Sanders MR, Brownell EA, Moss K. End-of-life care in the neonatal intensive care unit: experiences of staff and parents. Am J Perinatol. 2015;32(8):713–724. doi:10.1055/s-0034-1395475Find this resource:
20. Macdonald ME. Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. Pediatrics. 2005;116(4):884–890. doi:10.1542/peds.2004-1980Find this resource: