End-of-life care
Caring for someone at end-of-life is a unique and humbling experience. There are some parts of the dying process that might be more predictable, but this is also a time of great unpredictability. Being prepared for all possible scenarios you might encounter is of utmost importance. In this chapter, we will discuss symptoms and signs of the dying process.
We will help you prepare strategies for both pharmacologic and non-pharmacologic management of symptoms at end-of-life. We will also discuss psychosocial considerations when caring for the dying and their loved ones.
Stages of Dying
No one person approaches end-of-life in the same way. In the weeks preceding death, people tend to have poorer quality-of-life, particularly as it pertains to their physical health.[1] Days before death, people who are able to share their symptoms note overall worse well-being, including more anorexia, fatigue, dyspnea, dysphagia, and incontinence.[2] Pain, delirium, and noisy breathing have also been identified as prominent symptoms in the last hours to days of life.[3]
While not all symptoms are reversible at end-of-life, there are interventions that can help promote comfort when someone is in this phase. We will elaborate on these interventions further below.
Some people die unexpectedly and without warning. In fact, vital signs do not reliably predict when someone is going to die. While blood pressure and oxygen saturation decrease significantly in the last days of life, some people die with normal vital signs.[4] However, there are some characteristic signs that can help identify where someone is at in the dying process.
Nurses who have cared for the dying shared their perspectives on some of the common changes they have seen prior to someone’s death. Among their observations included an inability for people to get out of bed, changes in breathing patterns, concentrated urine, anxiety, delirium, and existential changes, such as peacefulness with death.[5]
Those who have a more traditional dying experience might progress through different stages of dying – early, middle, and late. It is not uncommon for a patient or their loved ones to ask, “How long do I/they have?”. Being able to identify some of the signs of dying can be helpful in answering this question. In the early stage, people might start to eat less. This can happen due to dysphagia or alterations in taste.[6]
They tend to spend more time in bed and seem more tired. Typically this happens in the weeks before someone dies. This can be distressing for those watching this process. People might ask, “Isn’t he or she going to starve to death?”. An empathic response can help alleviate some of this distress. For instance, a statement indicating that this is part of the dying process can be very helpful.
As the dying process progresses, people might become completely bedbound. Their mental status might change and they can develop confusion, increased sleepiness, or delirium. When someone is in the last hours to days of life, it might not be possible to arouse them from sleep. In this obtunded state, changes in their breathing pattern, such as apneic pauses, tachypnea, or a combination of slow and rapid breathing, might be noticeable. Mottling, which can include a marbled appearance to the skin or blue-purple discoloration, can arise.
Mottling might be most noticeable in the extremities as the body shifts blood to conserve the vital organs. Additionally, thermal dysregulation in this stage might lead to fever.
Table 1 lists some characteristic features of each of the stages of dying.
Table 1 – Stages of Dying
| Stage | Typical Time Frame | Signs and Symptoms |
|---|---|---|
| Early | Weeks | 🔸 Eating less 🔸 Spending more time in bed 🔸 Increased fatigue |
| Middle | Days | 🔸 Change in mental status 🔸 Audible secretions 🔸 Likely bedbound |
| Late | Hours | 🔸 Obtunded 🔸 Changes in breathing pattern 🔸 Skin changes, including mottling of the extremities 🔸 Fever |
Pain
There are several types of pain that people experience in the setting of life-limiting illness. When possible, attempting to determine the cause of the pain can be helpful to match both pharmacologic and non-pharmacologic interventions to treat it.
Somatic pain can stem from lesions in the skin, subcutaneous tissue, bone, muscle, blood vessels, and connective tissues. People might describe this type of pain as constant, aching, or dull.
Visceral pain occurs when there is organ or body cavity involvement of disease. It is harder to localize than somatic pain and people might report a deep, cramping, aching, or tearing pain.
Neuropathic pain is related to disease involvement of the central nervous system, including the spinal cord, or peripheral nerves. This pain is often described as burning, shooting, tingling, or electrical.[7]
Typically in the last hours to days of life it is not possible to determine or reverse the underlying etiology of the pain. Additionally, as someone becomes more somnolent, they might not be able to describe or rate the severity of their pain. In this setting, there are validated tools to evaluate the presence or severity of pain if someone cannot speak for themselves.
One tool, called Pain Assessment in Advanced Dementia (PAINAD), takes note of several objective signs of distress that could be due to pain.[8] Table 2 lists the measures used in the PAINAD scale. As the score increases, to a possible total of 10, the pain is objectively scored as more intense. Though this scale is validated more specifically for the population with dementia, it serves as a useful resource for any individual who cannot express their pain and can lead to improved pain control through administration of analgesic agents.[9]
Table 2 – Components of the PAINAD Scale [8]
| 0 points | 1 point | 2 points | |
|---|---|---|---|
| Breathing independent of vocalization | Normal | Occasional labored breathing. Short period of hyperventilation. | Noisy labored breathing. Long period of hyperventilation. Cheyne-Stokes respirations. |
| Negative vocalization | None | Occasional moan or groan. Low-level speech with a negative or disapproving quality. | Repeated troubled calling out. Loud moaning or groaning. Crying. |
| Facial expression | Smiling or inexpressive | Sad. Frightened. Frown. | Facial grimacing. |
| Body language | Relaxed | Tense. Distressed pacing. Fidgeting. | Rigid. Fists clenched. Knees pulled up. Pulling or pushing away. Striking out. |
| Consolability | No need to console | Distracted or reassured by voice or touch. | Unable to console, distract, or reassure. |
If someone loses ability to swallow, parenteral analgesic agents can be used to effectively manage pain. Traditionally, opioid medications are used to manage pain that arises at end-of-life. Several opioid agents, such as morphine and hydromorphone, are available for parenteral use. Sometimes a person has been on an oral regimen for their disease-related symptoms.
As they lose ability to swallow toward end-of-life, it is advisable to convert their oral regimen to be given parenterally. Table 3 lists suggested conversions between oral and parenteral opioid medications.
Table 3 – Suggested Opioid Conversions[10]
| Drug | Oral dose (mg) | Parenteral dose (mg) (subcutaneous or intravenous) |
|---|---|---|
| Morphine | 30 | 10 |
| Oxycodone | 20 | Not applicable |
| Hydrocodone | 20 | Not applicable |
| Hydromorphone | 7.5 | 1.5 |
| Fentanyl | Not applicable | 0.1 (100 mcg) |
| Oxymorphone | 10 | 1 |
If someone has never used opioid medications, it is advisable to use the lowest dose possible to treat the pain. If the first dose administered is ineffective as evidenced by verbal report or lack of lowering of an objective scale, such as PAINAD, doubling the dose is a reasonable next step.
Bolus doses of parenteral opioid medications should be trialed before a continuous infusion. A bolus medication given intravenously will take 10 to 15 minutes to take effect and, given subcutaneously, will take approximately 30 minutes to take effect. Doses can be administered every 30 minutes given the short half-life of parenteral opioids.
A continuous parenteral infusion takes up to 8 hours to reach steady state and should only be considered if prognosis is longer than 8 hours and if several bolus medications have been used to achieve comfort. If it is felt that someone will benefit from a continuous infusion of an opioid medication, the following suggested calculation steps can be used:
- Calculate the total amount of bolus doses used in milligrams.
- Divide the total dose used by ½.
- Once half of the total bolus doses used is calculated, divide this number by 24 hours.
- Prescribe the calculated hourly dose in mg/hour.
Doses of opioids, whether administered in bolus or continuous form, should be titrated upward to meet the person’s pain level until they appear more comfortable.
Dyspnea
Dyspnea can arise at end-of-life for a number of reasons. One proposed etiology is a disruption in sensory information sent to the brain due to issues such as blood gas abnormalities, parenchymal lung diseases, and hyperinflation of the lungs. Dyspnea can manifest in several ways, such as increased work of breathing, a sensation of air hunger, or chest tightness.[11]
While dyspnea is a subjective symptom, there are objective measures to determine if someone is in respiratory distress. The Respiratory Distress Observation Scale (RDOS) is a validated tool that can be helpful in distinguishing dyspnea from pain.[12] It is particularly useful at end-of-life, when someone might be unable to report the symptom of dyspnea.
Table 4 lists the components of the RDOS. With use of this scale, a score greater than 3 indicates the need to palliate dyspnea.[13]
Table 4 – Respiratory Distress Observation Scale[13]
| Variable | 0 points | 1 point | 2 points |
|---|---|---|---|
| Heart rate per minute(auscultated) | Baseline to +5 beats | Baseline + 6-10 beats | Baseline + > 10 beats |
| Respiratory rate per minute(auscultated) | Baseline to +3 breaths | Baseline + 4-6 breaths | Baseline + > 6 breaths |
| Restlessness: non-purposeful movements | None | Occasional, slight movements | Frequent movements |
| Accessory muscle use: rise in clavicle during inspiration | None | Slight rise | Pronounced rise |
| Paradoxical breathing pattern: abdomen moves on inspiration | None | Present | |
| Grunting at end-expiration: guttural sound | None | Present | |
| Nasal flaring: involuntary movement of nares | None | Present | |
| Look of fear | None | Upper iris and teeth are visible, teeth are not parted, lines in the forehead, flat eyebrows, raised eyebrows, no wrinkles in the nose |
There are both non-pharmacologic and pharmacologic interventions to treat dyspnea. The goal of all forms of therapy to treat dyspnea is to alleviate the sensation of air hunger. There is sometimes a misconception that medications, particularly in the opioid class, are used to lower the respiratory rate. However, the doses of medications used to treat dyspnea are often lower than those used to treat pain and are titrated upward only to meet someone’s symptom burden.
Supplemental oxygen therapy can be given if hypoxia is felt to be contributing to the dyspnea. A fan close to the cheek can also help to alleviate the sensation of air hunger. While the mechanism of fan therapy in alleviating air hunger has not been fully elucidated, it is felt to possibly be due to changes in facial temperature and stimulation of trigeminal nerve branches in the cheek and nasopharynx.[14]
If volume overload is thought to be causing dyspnea, gentle diuresis can be done. However, caution should be taken given that most people approaching end-of-life might not be taking in adequate food and fluids and further dehydration and organ dysfunction can be complications from diuresis in this context.
If other pharmacologic therapies, such as bronchodilator or corticosteroid therapy, are not indicated or appropriate if someone is at end-of-life, opioid therapy can be considered to alleviate the sensation of air hunger. The exact mechanism by which opioids work to alleviate air hunger is not known.
One consideration is that opioid medications bind peripheral opioid receptors in the lung and, through this binding, help with managing dyspnea. An additional consideration is that opioid medications can impact central processing of dyspnea in areas of the brain that are provoked by dyspnea. Lastly, as noted above, opioids can decrease respiratory drive, though the primary goal of opioid therapy for dyspnea is not to suppress respiration.[11]
Dosing of opioid medications for dyspnea is similar to dosing for pain as outlined above. If someone has previously been on opioid therapy for dyspnea or pain, it is possible that they will need higher doses to manage their dyspnea. However, if they have not recently been on opioid therapy, it is prudent to start at a low dose and titrate doses upward until adequate symptom relief has been achieved.
Delirium
It is estimated that up to 83% of people with advanced cancer will become delirious before they die.[15] Delirium that occurs at end of life is often considered to be irreversible. It might not be within someone’s care goals to work up reversible causes of delirium. Additionally, interventions that might commonly work to reverse delirium, such as intravenous fluid hydration or antibiotic therapy, might not be effective due to the multiorgan dysfunction that can occur during the process of dying.
Delirium can be hypoactive, in which someone’s mental state waxes and wanes with some periods of lucidity. Language disturbances, limited attention, and disorientation might be present causing the person to seem reserved. Hyperactive delirium might also present and signs can be visual, auditory, or tactile hallucinations, picking at clothing, grabbing at items in the air, mumbling, or calling out. Mixed hypo and hyperactive delirium occurs frequently. It can be helpful to speak with those who are most familiar with the dying individual to determine if the signs of delirium are a change from the person’s baseline.[15]
Delirium can be distressing to both the dying individual and their loved ones. Treatment of delirium, including pharmacologic interventions and providing a safe environment, can be beneficial in providing comfort. Neuroleptic and benzodiazepine medications are often helping in managing this type of distress.
Olanzapine is an oral option that has an anxiolytic component. This comes in a sublingual dissolving form which makes it useful for those who are having difficulty swallowing. If parenteral access is available, haloperidol can also be used for distressing symptoms, particularly if there is a hyperactive delirium present. The neuroleptic medications are particularly helpful for the positive symptoms of delirium, including hallucinations and nightmares.[15]
Though benzodiazepines are not often considered for use in reversible delirium, at end-of-life they can be very helpful in managing the distress associated with the delirium. Lorazepam can be given orally in solution or parenterally. Suggested starting doses for medications to treat delirium are listed in Table 5.
Table 5 – Suggested Doses of Medications to Treat Delirium
| Medication | Oral | Parenteral |
|---|---|---|
| Haloperidol | 0.5 mg – 2 mg by mouth every 4 hours as needed | 0.5 mg to 5 mg intravenous or subcutaneous every 2 hours as needed |
| Olanzapine | 2.5 mg to 5 mg by mouth every 6 hours as needed | Not applicable |
| Lorazepam | 0.5 mg to 2 mg by mouth every 3 hours as needed | 0.5 mg to 2 mg intravenous or subcutaneous every 1 to 2 hours as needed |
Secretions
As someone is in a more relaxed and obtunded state, their ability to swallow becomes impaired. They might continue to produce saliva and, given their inability to swallow, the saliva might pool at the back of the throat. This can cause a bubbling noise as air passes over the pooled saliva with breathing. While this is unlikely to be uncomfortable for the dying person, it might be distressing to listen to for those at the bedside.
Colloquially the pooled saliva are termed “death rattle” or secretions. Some disease states are more likely to cause secretions, such as lung or brain tumors, head injuries, chest infections, cardiac arrest, and neuromuscular disorders that might be associated with dysphagia.[16] When secretions present, death is likely on the order of hours to no more than a few days.
There are several interventions that can be used to manage secretions. Laterally positioning someone can help the saliva drain down the throat. If this is ineffective, there are a number of anticholinergic agents that can be used to minimize saliva production. One agent is hyoscyamine, which can be used under the tongue. If parenteral access is available, glycopyrrolate is an alternate agent. One advantage of starting with either hyoscyamine or glycopyrrolate is that neither agent crosses the blood brain barrier.
Given that anticholinergic agents might worsen delirium, this inability to cross the blood barrier makes these agents less likely to contribute to delirium at end of life. If alternate agents are needed to manage secretions, a next option to consider is atropine ophthalmic drops, which can be administered under the tongue. This medication does cross the blood brain barrier and can possibly contribute to delirium. A last resort option for refractory secretions is scopolamine, which can be administered via a patch.
This medication can be very deliriogenic and also takes up to 12 hours to reach steady state. Given this, it is best used in those with prognoses on the order of days with close monitoring for worsening of delirium symptoms.
In general, it is advisable to start anticholinergic medications as soon as secretions are detected to promote maximal efficacy.[16] Table 6 lists some suggested starting doses for anticholinergic medications for management of secretions.
Table 6 – Anticholinergic Agents for Management of Secretions
| Medication | Oral | Parenteral |
|---|---|---|
| Hyoscyamine | 0.125 mg sublingual every 4 hours as needed | 0.250 mg intravenous or subcutaneous every 6 hours as needed |
| Glycopyrrolate | Not applicable | 0.2 mg to 0.4 mg intravenous or subcutaneous every 2 hours as needed |
| Atropine 1% ophthalmic solution | 4 drops sublingual every 4 hours as needed | Not applicable |
| Scopolamine 1 mg patch | Not applicable | 1 to 3 patches transdermal every 3 days as needed |
Myoclonus
Myoclonus can present at end of life due to multiple reasons including organ dysfunction, opioid neurotoxicity, and neurologic dysfunction. While this is typically readily apparent, the underlying etiology might not be readily detectable or reversible.
If myoclonus progresses, it can lead to seizure, which can be distressing to the dying person or those at their bedside. If myoclonus is due to suspected neurotoxicity from opioids, rotation to a different agent with at least a 25% dose equivalent reduction is recommended. If this is ineffective at reducing or eliminating the myoclonus or if it is suspected to be due to a different cause, benzodiazepines can be given to prevent progression to seizures.
Additionally, it might not be possible to rotate to a different opioid and concurrent administration of a benzodiazepine can help to control the myoclonus in this case.[17] Among the benzodiazepines used for this purpose are lorazepam, clonazepam, and midazolam.
Comfort Care Order Sets
In considering the various symptoms that arise at end-of-life, an order set of medications that can address these symptoms is a useful tool. It was known to previously be common practice to start a continuous infusion of an opioid when someone transitioned to end-of-life in the hospital.[18]
As noted above, not only does this practice not adequately control symptoms in timely fashion, but it can hasten death. If a palliative care team is not available to provide support in symptom management at end-of-life, have a default set of orders with appropriate starting doses can be beneficial in ensuring the dying person has medications at the ready for a possible increase in symptom burden.
The following is an example of an order set for someone who has not been on opioid medications previously:
| Dyspnea | Pain | Delirium | Secretions | Fever | Seizure |
|---|---|---|---|---|---|
Intravenous Morphine 1 mg to 2 mg intravenous every 1 hour as needed for dyspnea. Alternate:Hydromorphone 0.2 mg to 0.4 mg intravenous every 1 hour as needed for dyspnea. | Intravenous Morphine 1 mg to 2 mg intravenous every 1 hour as needed for pain. Alternate:Hydromorphone 0.2 mg to 0.4 mg intravenous every 1 hour as needed for pain. | Intravenous Haloperidol 0.5 mg intravenous q4h PRN agitation that is not verbally redirectable | Intravenous Glycopyrrolate 0.2 mg intravenous q2h PRN secretions Sublingual Atropine 1% ophthalmic solution 2 drops sublingual q4h PRN secretions Transdermal Scopolamine patch 0.33 mg 1 patch q3 days PRN refractory secretions | Rectal Acetaminophen 650 mg via rectum q4h PRN fever | Intravenous Lorazepam 2 mg intravenous q15 minutes PRN seizure activity lasting greater than 5 minutes. If seizure does not terminate 5 minutes after administration, please call house staff. |
Psychosocial Considerations: Trauma-Informed Care at End-of-Life
It is estimated that up to 90% of older adults have experienced a traumatic event in their lifetime.[19] Trauma can include an event or series of events that threatened the physical or emotional health of an individual and has lasting effects on multiple domains of their well-being.[20]
Not all adults who have experienced trauma will be diagnosed with post-traumatic stress disorder (PTSD), but it is important to identify symptom clusters that can impact quality of life and the dying process. Additionally, there might not be ample time to provide traditional treatments for trauma at end-of-life or treatment might not be appropriate given the potential for these treatments to increase physical or mental distress.[21] However, care can be tailored to acknowledge the presence of trauma.
The overarching aims of trauma-informed care are to understand how trauma impacts someone and how they might have experienced or presently experience healthcare. This type of care accommodates the unique needs of trauma survivors to reduce further harm and prevent re-traumatization.[22]
In 2014 the Substance Abuse and Mental Health Services Administration (SAMHSA) created a document that outlines guiding principles of a trauma-informed approach across a variety of organizational settings.[20]
These principles can be adapted seamlessly to a healthcare environment. The six key trauma-informed principles included in this document are safety, trustworthiness and transparency, peer support, collaboration and mutuality, empowerment, voice, and choice, and cultural, historical, and gender issues. Table 7 highlights these six principles and their relevance to clinical care.
Table 7: SAMHSA’s Six Principles of a Trauma-Informed Approach[2]
| Principle | Definition |
|---|---|
| Safety | Ensuring that those we care for feel physically and psychologically safe in their environment and interpersonal interactions. |
| Trustworthiness and Transparency | Decision-making is conducted with transparency to foster trust with our patients and their loved ones. |
| Peer Support | Using stories and lived experience of others who have experienced or survived trauma to promote recovery and healing. |
| Collaboration and Mutuality | Leveling of power differences between clinical teams and patients to foster shared decision-making and power. |
| Empowerment, Voice, and Choice | Building upon the strengths and experiences of our patients, empowering both them and members of the care team. Providing choices and self-advocacy skills. |
| Cultural, Historical, and Gender Issues | Moving past cultural stereotypes and biases, encouraging access to access to gender- responsive services, recognizing historical trauma, and leveraging the healing value of cultural traditions. |
Individuals might not initially disclose a history of trauma. It can be helpful to screen for trauma to prepare for the possibility that it can impact someone’s end-of-life experience. Symptoms, such as agitation or sleep disturbance, can be confounded with those related to the person’s life-limiting illness.
Someone might also experience more traditional symptoms of PTSD, such as intrusive memories, flashbacks, or nightmares. Acknowledging trauma and demonstrating comfort in discussing the influence of trauma on someone’s experience can have numerous benefits, including fostering rapport, trust, and a collaborative relationship.
Table 8 lists some recommendations for inquiring about a history of trauma and responding to a disclosure of trauma. [23]
Table 8: Suggested Trauma Screening Questions and Responses [23]
| Suggested Screening Question | Suggested Response to Trauma Disclosure |
|---|---|
| “As people live with serious illness, they sometimes experience reminders of prior scary events. Has this happened to you?” | “That sounds frightening. Please tell me more about how this is impacting you now.” |
| “Have you felt guilty about events that previously happened in your life?” | “What other emotions have come up for you during this time?” |
| “Have you been having any nightmares or other thoughts about events that happened in your life?” | “I can’t imagine how hard this must be for you. Thank you for sharing these experiences with me.” |
Many of the interventions that are known to effectively treat PTSD might not be appropriate in a population with life-limiting illness due to limited prognosis, intolerance to length of treatment sessions, worsening of physical or emotional symptoms, or risk of increased distress prior to death.[21]
Several years ago a model was proposed to provide support in a stepwise nature to more appropriately provide interventions that match someone’s prognosis. Known as the Stepwise Psychosocial Palliative Care (SPPC) model, three phases are delineated, each of which is meant to match someone’s ability to participate. In the first stage, goals are for rapid palliation of distress when prognosis is limited. The second stage involves psychoeducation on PTSD symptoms and enhancing ability to cope. Recommendations in the third stage mirror more traditional approaches for longer-term treatment of PTSD with goal of eradicating symptoms.
The major advantage of this type of model is that it keeps prognosis and patient comfort at the forefront of the recommendations for various stages.
Psychosocial Considerations: Spiritual Support and Role of the Hospice Chaplain
Spirituality can have a variety of meanings depending on one’s background and personal beliefs.
Spirituality can be defined as[24]:
- “A person’s experience of, or belief in, a power apart from his or her own existence” [25]
- “the search for meaning in life events and a yearning for connectedness to the universe” [26]
- “ A quality that goes beyond religious affiliation, that strives for inspiration, reverence, awe, meaning and purpose, even in those who do not believe in God. The spiritual dimension tries to be in harmony with the universe, strives for answers about the infinite, and comes essentially into focus in times of emotional stress, physical (and mental) illness, loss, bereavement and death” [27]
Alternatively, religion can be defined as:
- “A set of beliefs and practices related to the issue of what exists beyond the visible world, generally including the idea of the existence of a being, group of beings, an external principle or a transcendent spiritual entity” [28]
- “An organized system of practices and beliefs in which people engage… a platform for the expression of spirituality…” [25]
- “Set of beliefs, practices, and language that characterizes a community that is searching for transcendent meaning in a particular way, generally based upon belief in a deity” [29]
There is some debate over the definition of both spirituality and religion and some would even use the terms interchangeably. To provide a general delineation for this topic, spirituality is thought of as a broader term, which may include religion but also may stand alone for others who do not identify with a particular religious group/affiliation. [24]
The literature shows that the incorporation of spiritual support is associated with patients having a greater degree of happiness, optimism, and hope with an association of less despair at end-of-life. [30] Although, spiritual support at end-of-life is associated with less suffering, the rate at which patients and families request chaplaincy or spiritual support while on hospice is low. [30]
Inquiring about spiritual needs is a role for all hospice team members. Ambiguity around spirituality and religion can be difficult to navigate, as patients and family members may have their own set of beliefs and values. The introduction of the hospice chaplain should be framed as an added layer of spiritual support with comprehensive training.
The role of the hospice chaplain is not to change beliefs or impose altered practices. Additionally, the hospice chaplain does not take the place of long trusted community faith leaders that may have a prior established relationship with the patient or family. [30]
Community faith leaders should be permitted to visit and provide spiritual counsel at the patient or family’s request. The hospice chaplain can serve as a therapeutic presence and should be offered as a resource to all, even patients and families who do not identify with a religion or spiritual practice.
Some of the major roles of the hospice chaplain including assisting with establishing meaning during the dying process, assisting with resolving issues of human forgiveness as it relates to a higher power, and coping with fears about dying and the afterlife. [30]
Often times, the hospice chaplain is a therapeutic presence as an entity that can address moral, emotional, and existential distress without attachment to the medical element. The hospice chaplain has the ability to offer meaning in the setting of pain and physical suffering which may offer peace to both patients and families. This perspective can be especially helpful for those who may express anger or frustration with God or a higher power for the declining health of themselves or a loved one. The specialized skillset of the hospice chaplain is extremely valuable for addressing existential distress. Should the hospice chaplain be unavailable or even rejected, the other hospice team members should have some knowledge of providing therapeutic presence. Provide space for the individual to express their thoughts.
The difficult and uncertain question of “why does my loved one have to go through this?” may emerge. Endorsing the individual’s pain in an empathetic way acknowledges the difficult situation and helps them to feel validated.
Assisting families to recognize tasks or activities in the moment that may help the dying loved one can assist with alleviating some of their own existential distress. Activities such as reading, reminiscing about previous stories, or quiet companionship are small but very meaningful.
Psychosocial Considerations: Communication with Family of the Actively Dying
Many people do not have experience witnessing or participating in the death of a loved one. Not only can this process activate multiple emotions, but the physical transformation of the loved one is often difficult to watch. A very important role of the hospice interdisciplinary team is to provide support to family members and communicate necessary and desired information.
If the patient is able to engage in conversation, establishing their goals, worries and preferences for care at the time of hospice admission is helpful for the interdisciplinary team to form the care plan. Completion of an advance directive more upstream when the patient is earlier in their disease process is optimal to establish a health care proxy and primary family contact.
It is common that patients approaching the last days of life lack capacity to make medical decisions. Alternatively, patients in the last days of life have a variable level of consciousness, which limits the ability to participate in discussions regarding medical care. At this point, communication is primarily with family members as they prepare for the passing of their loved one.
The SPIKES (setting, patient/family perception, invitation, knowledge, emotion, summarize) mnemonic is a very effective structure to follow while communicating with family members, even in the context of end-of-life care and education. This is well known to palliative medicine as a way to present distressing information. When caring for the actively dying patient, most of the major decision making has already occurred. However this mnemonic is still helpful to explore how much experience a family member has with the end of life, communicate assessment findings, assess emotional states/needs, and provide end-of-life education.
Setting: Establish the individuals who are important to include in the sharing of information. If the patient is unable to participate, include the already established healthcare proxy. Whenever possible, continue to make the environment comfortable, by placing plenty of chairs and clearing out medical equipment. Make your best attempt to sit down with family members to communicate in a private space.[31] Recognize the talent and skill set of the interdisciplinary team in terms of providing support. If possible, it is valuable to talk to a family with another member of the interdisciplinary team who may have a different rapport with the family, or way of sharing a perspective. For example, a physician may bring the hospice social worker to provide an assessment update to the family of a dying loved one. This provides an opportunity for the hospice social worker to assess family emotional states, and allocate resources if appropriate.
Patient/Family Perception: Ask the family about their perspective on their loved one’s condition.[31] Most often, family members will notice changes that are common near the end of life, such as reduced appetite, increased fatigue, and reduced interest in hobbies. This provides a valuable starting point for the kind of information to share. It is also helpful to inquire if the individual has participated in the care of the actively dying before. Those who have, can often recall some experiences. The interdisciplinary team should be prepared to address any negative experiences by actively listening, acknowledging the event as painful or unpleasant, and revising the plan of care to minimize or avoid a repeat negative experience.
Invitation: Generally, open ended questions are valued in palliative care. In the case of discussing topics related to end-of-life, family members can often be very emotional or in a state of shock which may impact the ability to ask questions. Some people may not know what to ask. It may be helpful to offer up information by using the ask-tell-ask method.
Common information that family members desire to know include estimated prognosis, assessment findings/changes and meaning, and how to determine if their loved one is in pain. Please see some examples below on how to ask for permission to share more information about a patient’s clinical status:
- “Would it be helpful to you if I explained physical changes you might see in your loved one?”
- “Would it be helpful if we shared an estimate on how much time we feel your loved one has?“
- “Your loved one is not able to talk to us anymore. Would you like to know how we can tell if your loved one is in pain or distressed?”
Giving Knowledge: Some family members may want all of the details regarding assessment findings like apnea, mottling, reduced urine output, and somnolence. More direct communication to link these findings to a shorter prognosis is favorable in this case. It’s also helpful to provide a warning shot that news on an unfavorable prognosis is coming by using language such as “I`m sorry to report..” or “I have some unfortunate news to share…” Please see the example below[31]:
“Over the last 12 hours, your loved one is having more pauses in their breathing. Your loved one has not woken up with verbal or physical stimulation. The nail beds on your loved ones fingers and toes are more dusky/blue. I’m sorry to report that these changes indicate that time is getting shorter”.
Some family members may not want explicit details, indicating a preference for an indirect communication style. In this scenario, your medical updates may be in the form of sharing more vague updates, such as:
“based on the overnight events, we made some changes to the scheduled medicines to improve the management of your loved one’s symptoms”
or
“it seems that time is getting shorter based on the assessment findings from today vs. yesterday”
It is important to recognize everyone has a different way of learning and processing information. Some may prefer to read as opposed to communicating verbally. In this case, reading material on care of the actively dying in layman terms can be helpful to leave at the bedside or in common areas that are available to family members.
The interdisciplinary team should inquire if certain family members/friends want to be at the patient’s bedside at the time of the passing. Although no one can predict with absolute certainty when an individual will die, communicating assessment findings of the imminently dying and notifying family as soon as these findings appear is the best approach.
Addressing Emotion: Responding to emotion is a key component of this communication. Although this may be challenging, recognition of the emotion helps families to feel validated and understood.[31] This also allows for ongoing rapport building with family. After sharing the information, observe for emotional responses. As stated above, a common response is shock. Other responses may be tearfulness, an expression of disappointment, anger, or silence.[31]
Name the emotion and provide empathetic statements such as[31]:
- “I can see how upsetting this news is”
- “I’m sorry this was not the scenario you were expecting”
- “The decline occurred quickly, I wish things were different”
If the response is silence, attempt to explore the individual’s thought process with open ended questions such as[31]:
- “Could you tell me what’s going through your mind right now?”
- “Can you share your worries?”
If the individual is still not able to elaborate on their emotions, asking “are you surprised by this information?” can be a way to broadly characterize an unnamed emotion. Allowing silence in this instance is also appropriate. This can be an uncomfortable experience, but very necessary to allow the individual time to process. Resist the urge to break the silence first to provide the individual space to openly share thoughts.
Some individuals may even give an expression of relief. Relief can feel strange for family members during this time, and some may express guilt for feeling this way. However, relief commonly comes from a place of kindness and caring for the dying person who will soon no longer be suffering. Relief may also come because the provider presents information that validates what the individual is already thinking.
The actively dying phase is an emotional time, some families may sit vigil at the bedside until the passing of their loved one. Others may prefer not to spend long periods of time at the bedside.
Strategy and summary: The actively dying phase is an emotional time that affects everyone differently. There are times in which the same questions may be asked repeatedly. Calmly repeat information that family members request, recognizing that the atypical state of affairs is usually the catalyst. The summary of this conversation includes re-stating the ultimate goal, which is typically continuing to optimize comfort and symptom relief in the care of the actively dying.
Conclusion
Providing high-quality end-of-life care is a rewarding experience. Being prepared for both the predictable and unpredictable through anticipation of symptoms and questions that might arise can go a long way in helping the dying and their loves ones feel supported through this process.
In this chapter, we reviewed management strategies for select symptoms at end-of-life and highlighted psychosocial considerations for the interdisciplinary end-of-life care team. With these added tools, care can be tailored at end-of-life to each individual’s unique care needs to ensure a peaceful transition to dying.
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