7

Psychosocial and Spiritual Aspects of Care

Imagine that you are dying. Magically, you are completely comfortable, at least physically, yet this is not your fantasy death. This is not how you want to die. Where are you? What is happening? Why, despite being physically comfortable, is this a death to be feared?

This exercise is the mirror image of the fantasy death exercise introduced in Chapter 2. When I do this exercise with clinicians, a heavy silence usually falls upon the group. No nervous laughter or jokes intrude. A soft voice says, “In an ICU, hooked up to tubes.” “Alone,” echoes another. “In a nursing home, tied down in bed.” “In diapers.” “In a dark room. Nobody else is there—no family, no friends.”

Difficult as this exercise is, I hope that participants come to understand the importance of the psyche at the end of life; there is far more to palliative care than treating physical symptoms. Although physical symptoms can be very troublesome for dying patients, we are reasonably good at making such symptoms at least bearable. My impression is that far more suffering in patients with advanced illness results from psychic than from physical distress. I find such distress much more challenging to address. Speaking just for myself, of course I want to be comfortable physically, but what I fear in my death is isolation and alienation.

Our language fails us in trying to put into words the psychic distress to which we bear witness. Categories of psychic distress tend to be extrapolated from formal psychological diagnoses. We speak of depression, anxiety, and delirium, for example. Such categorizations can be helpful in suggesting certain therapeutic approaches and will be discussed in more detail. However, when discussing psychic distress in advanced illness in particular, I often get the uneasy feeling that our definitions and categories fall short, better serving our need to impose organization on the mysterious landscape of the mind than necessarily serving our ability to aid the dying and their families.

To the extent that existential issues, such as a loss of control and isolation, are major forms of suffering, why do we see so little discussion of this in palliative care education? I have reviewed many curricula for end-of-life care. Almost all contain something on depression and delirium but very little on these topics. Why? My guess is that it has something to do with the fact that we do not categorize isolation or a “need to be in control” as illnesses. If we recognize suffering that appears to result from frustration in not being in control, we tend to see the issue as one of unavoidable external circumstances interacting with a relatively fixed personality. To the extent that we can modify the environment or the person’s ability to interact with the environment, control can be enhanced and distress relieved. This can, in fact, be a very useful approach to such distress, but we are limited in our ability to alter the environment and associated life circumstances or the person’s ability to interact with the environment.

In keeping with the narrative approach of this book, how can we understand such distress? People have an understanding of how they got where they are at any point in time. This understanding is part of their story, which projects into the future along a particular storyline. Thus, a person who sees his or her role as a “fighter” will project this role into the future, even when there is a significant “turn in the plot,” as often happens with illness.¹ This is one way of coping with an unexpected turn of events—we fall back on our strengths. However, at times people encounter plot changes that are so extreme that they appear to negate the very premises upon which their life stories have been built. The rugged individualist who prided himself on being able to handle any problem finds himself completely unprepared for life following a stroke. A mother of great religious faith loses a child, a loss that seems completely unfair and contrary to her belief in a just God. The daughter who swore she would never put her father in a nursing home finds she has no other recourse. In the aftermath she experiences crushing guilt.

The storylines of the rugged individualist, the person of faith, and the loyal daughter all contain admirable qualities and probably served these individuals well, but they may be inadequate, in and of themselves, to enable the protagonists to respond positively to new and unanticipated challenges that may arise associated with serious illness and death. People in such circumstances face crises in their storylines.

What are our roles as clinicians in all this? The truth is, we will find many people who will suffer mightily despite our best efforts. If we judge ourselves based on whether we can eliminate all suffering, we make the same mistake clinicians make when they judge death to be a failure because they cannot cure everything. To the extent that a patient’s or family member’s distress arises from his or her storyline, we must first approach this distress with respect. To negate the storyline is tantamount to negating the person. If somebody really wants to die “with his boots on” or “rage, rage, against the dying of the light,” I guess that is OK. At least he got to do it “his way,” as Frank Sinatra crooned. I may be saddened by what I see, even think some of it foolish. However, I also feel I must struggle to respect that these are their stories, not mine. At times we will have special opportunities to suggest different approaches that may result in less distress and yet be acceptable within that person’s storyline. Rugged individualism may be reinterpreted as a strong spirit overcoming great obstacles such as increasing dependence. The care received in dependence may come to be understood as “getting one’s due” after a life well lived rather than as an assault on dignity.

“She’s dying. Who wouldn’t be depressed?” Reactions such as this are common when depression is encountered in the terminally ill. Depression at the end of life is estimated to occur in between 25% and 75% of cases; not rare, but also not inevitable. Even so, it is under-recognized by clinicians, who may think that depression is part of normal dying. It is important to diagnose depression when it exists because depression is usually treatable.²

Diagnosing depression in dying patients can be tricky. The signs and symptoms clinicians have learned to associate with depression are unreliable in the dying. Vegetative signs and symptoms, such as anorexia, anhedonia (a lack of interest in pleasurable activities), social withdrawal, and weight loss, may represent depression but may also occur in patients with pain, in grieving patients, and even in the “normally dying.” Frequently, depression, grief, pain, and “normal dying” overlap.³ The problem facing the clinician is not so much differential diagnosis in the traditional sense as it is to understand the relative contribution of various factors, such as depression, grief, and pain, to the patient’s distress.

Standard instruments used to diagnose depression, such as the Geriatric Depression Scale (GDS), may be unreliable in dying patients because these instruments have not been rigorously tested in this population. The GDS was developed for geriatric patients in recognition of the fact that the functional measures of standard scales for depression were found to be unhelpful in geriatric patients, who frequently have functional impairments that result from medical illness.⁴ However, the GDS was not developed with dying in mind. GDS items such as “I have crying spells” or “I feel hopeful about the future” may be interpreted very differently by dying patients. Some dying patients who score as depressed on the GDS may not actually be depressed. Tears may represent normal, healthy grief as well as depression. Concern about the future is fairly common among dying patients. Until we have a valid and accepted instrument to assess depression, here are some suggested questions for evaluating depression at the end of life:

My impression is that if patients say they are depressed in response to any of these or similar questions, they probably are depressed, as Chochinov et al. found in one study.⁵ That is, these questions probably have good specificity, although they may lack sensitivity. I have certainly encountered a number of patients who seem unable to identify depression in themselves: “I don’t know, doctor, I just feel terrible all over.” My guess is that for these patients, a more structured instrument may be helpful in identifying clinical depression.

I will not try to pretend that I understand why people become depressed at the end of life or to what extent depression represents a biochemical imbalance. Certain risk factors for depression are known: a prior history of depression, poorly controlled pain, multiple losses, and certain disease processes such as hypothyroidism, stroke, pancreatic cancer, and other diseases that result in an increase in inflammatory cytokines, among others.⁶ Even though a prior history of depression is a rather obvious risk factor for depression, it is unclear to me that this necessarily means that the severity of depression will be worse for such patients at the end of life. I have met a number of patients with prior histories of depression who have learned to monitor their symptoms and to cope with depression when it occurs. Such patients may do quite well. In contrast, patients with no prior history of depression may be overwhelmed by new-onset depression, lack the coping skills for it, and experience more severe symptomatology. This would be an interesting research topic.

Whatever the cause, it is important not to view depression at the end of life simply as an unfortunate and random event, external to the person, to be solved simply with medication. Depression is usually heavily invested with meaning. In dying, unresolved issues commonly resurface. Coping strategies that might have served well in the past may not serve so well when confronted with dying. Fear may pervade depression. Often such fears go unspoken: “I may have accepted that I’m dying, but I’m terrified of what will happen. Nobody has spoken to me about that.” The dying may also have fears for loved ones who will be left behind: “I just don’t know how she is going to get by without me.” Identifying these concerns and addressing them (in addition to treating other unrelieved symptoms such as pain) can go far in helping with depression.

For several reasons, the pharmacologic treatment of depression in dying patients is particularly challenging:⁷

Drug therapy should be tailored to the individual patient’s situation. Relevant questions to ask in comparing medications include:^8,9

Psychostimulants such as methylphenidate and dextroamphetamine may be helpful when a rapid response (within 24 to 48 hours) is desired. They work best in patients with psychomotor retardation and should be avoided in agitated or confused patients. Positive side effects may include increased energy and appetite and counteraction of opioid-induced sedation. Psychostimulants may be continued indefinitely alone or combined with a traditional antidepressant while one waits for the antidepressant to kick in. Adverse effects include tremulousness, anxiety, and insomnia, although these are rarely seen with lower doses in most patients.¹⁰

Tricyclic antidepressants (TCAs) can serve a dual purpose as antidepressants and as analgesics in the treatment of neuropathic pain. Because of their anticholinergic properties they must be used with caution in the elderly. TCAs have a delayed onset of action for depression (two to four weeks) and have extensive drug–drug interactions. Of the TCAs, nortriptyline and desipramine have fewer anticholinergic effects than does amitriptyline, and renal clearance is less variable with age.¹¹ Notably, the antidepressant and analgesic effects of TCAs are not related their anticholinergic side effects. Therefore, unless anticholinergic side effects are explicitly desired (which is rare), TCAs with fewer anticholinergic side effects are generally preferred.

Selective serotonin reuptake inhibitors (SSRIs) have now become the first line of treatment for depression because of their safety profile, once-daily dosing schedule, and more rapid onset of action compared to TCAs (10 days to 2 weeks). In patients who are moderately to severely depressed, an SSRI may be given concomitantly with a psychostimulant, tapering the psychostimulant after one to two weeks if affect has improved.

Ketamine is an parenteral anesthetic with dissociative properties that blocks N-methyl-d-aspartate (NMDA) receptors. Recently, nasal ketamine was approved by the FDA for treatment-resistant depression. While studies are limited, there is growing interest in the use of ketamine in palliative care for depression, as the onset of action is more rapid than for traditional antidepressants.¹² Common side effects include dissociative feelings, fatigue, and poor memory for up to four hours after dosing. While promising, more studies are needed regarding dosing, dose intervals, and proper patient selection.

Anxiety

Anxiety in dying patients tends to look very much like anxiety in patients who are not dying. Anxious patients tend to be agitated. They may pace, call out, fidget, or moan. Anxiety is relatively easy to recognize; it is more difficult to understand why the patient is anxious. Anxiety can result from fears, grief reactions, or altered states of consciousness. It may be associated with physical symptoms, especially dyspnea and pain. Depression may also present with anxiety as a prominent feature.

Anxiety commonly arises in the dying. Although anxiety tends to respond to the usual anxiolytics, the clinician is cautioned not to jump to medications too quickly. Anxiety in most patients seems to be a transient state, reflecting some deeper distress that we should try to identify and address. For most people dying is very scary. The images we have of dying, largely derived from movies and television, are ones of violence and pain. The fear of loss of self in dying is something people who know they are dying wrestle with, some more successfully than others. While there is no easy fix for such existential distress, many fears are very concrete and can be addressed, thereby relieving fear and associated anxiety. How will I die? Will it hurt? We can do much to reassure patients and families that most dying people who receive good palliative care die peacefully and that pain can be controlled. Identifying and addressing these fears, which are so scary to some that they have trouble verbalizing them, can go far toward relieving anxiety.

Anxiety related to grief may respond to grief facilitation (see section on grief below). Anxiety related to depression or physical symptoms often responds to treatment for depression or to relief of the physical symptom. Anxiety associated with altered states, such as sundowning in dementia, may improve if the sensorium is cleared using an agent such as haloperidol or by using reorienting activities such as pointing out clocks and familiar objects.

Benzodiazepines are the mainstay of pharmacotherapy for anxiety.⁸ These medications can be very efficacious but should be used with caution, especially in the elderly when anxiety or agitation is thought to arise from dementia or delirium, because a “paradoxical response” may occur. Benzodiazepines can disinhibit patients, especially if they are prone to confusion. Benzodiazepines function rather like alcohol: One drink, and some people are swinging from the rafters; four drinks, and they are asleep. Lorazepam is most commonly used, as it is relatively short acting. If anxiety is responsive to benzodiazepines and is persistent throughout the day, a longer-acting agent, such as diazepam, may be chosen, much as we use long-acting opioids for basal pain.

Three other agents bear mentioning:

Anxiety may also exist as a part of a continuum with terminal distress or delirium. The goal of standard anxiolytic therapy is to relieve anxiety without undue sedation. Unfortunately, in patients close to death, sometimes we have little choice but to advance to frank sedation if anxiety or agitation is unresponsive to standard anxiolytic doses. (See the discussion of treatment options in the section on altered states below.)

Grief

The longer I work in palliative care, the more I appreciate grief. We tend to have a narrow conceptualization of grief: Someone dies, someone grieves. In fact, grief as a process seems central to human adaptation to the inevitability of change. Grief is usually the major issue for those who have lost a loved one. This is the grief of bereavement, yet we all grieve when we lose something or someone to whom we are attached. In seeing my gray and disappearing hair, I grieve my youth. I grieve the loss of a great nurse on our unit who just moved on to a new job. Even if they never treat a dying patient, clinicians come up against grief every day, whether they recognize it or not.

Grief is often experienced as a painful, tearing sensation, much like two strips of Velcro being pulled apart. The person’s world has been ripped apart, opening a painful wound, which we call grief. However, grief is also a process wherein the grieving person works to create a new self in a new relationship with a changing world. Grief is a process of healing this wound. On one side of the wound is a self that has been torn from some object of attachment on the other side, the loss-object. Grief as a process can be understood as the adjustment to this radical change in the relationship between the self and the loss-object. Loss-objects may be people or something as simple as the pleasure of drinking coffee in the morning. The loss-object can even be one’s own self-image. In the story of my possibly having a DVT, I was grieving an image of myself in a certain state of health. Grief can be understood as a process of physical, affective, and cognitive change that occurs in response to an abrupt alteration in the relationship between the grieving person and the loss-object. A central task in grieving is to redefine this relationship.¹⁷ The grieving person moves, sometimes slowly, sometimes quickly, toward a new equilibrium as he or she redefines the relationship with the loss-object.

In considering this process, a paradox arises. Although the grieving person experiences a sense of separation or dislocation from the loss-object, in fact the relationship continues between the grieving person and the loss-object. Grief as a process is not about completing a partial separation, like amputating a partially severed limb, but is about an evolving, changing, and ultimately new relationship between the self and the loss-object. Understanding this is critical to grief work. Bereaved individuals, if told that they must “get over” their grief, will likely reject this advice. They may fear that if they were to finish grieving by completing a psychic “amputation,” they would truly lose their loved one forever. Many would prefer the pain of frozen grief to the prospect of such permanent loss. As bereaved people can readily tell you, they still have a relationship with the deceased; it just changes. My father died almost 30 years ago. I am still grieving this loss, albeit in a softer way. More recently, my older brother died. I will continue to have relationships with my father and brother as long as I have a self. Over the years these relationships has changed and will continue to change. I notice this change most obviously in my dreams. At times, I am pleasantly surprised to see them: “Dad! Tom! Where have you been?” At other times I take their presence for granted. That they are there is just part of my dream world, completely normal. It is only when I awake that I feel their loss. Such continuity between the living and the dead is suggested in the following passage:

Anticipatory grief is the grief “that the terminally ill patient has to undergo in order to prepare himself for his final separation from this world.”¹⁸ This definition specifically references dying, but, as suggested above, it occurs anytime there is a significant revision in one’s life story. Anticipatory grief is a normal grief reaction to perceived loss. Still, most of the literature on anticipatory grief is drawn from end-of-life care. Anticipatory grief occurs both in the dying and in those close to them.^19,20 Dying people (and their loved ones) prepare for death by mourning the various losses implicit in the death. The anticipated loss of loved ones is obvious. The simple pleasures of living may also be grieved. The term “anticipatory” (or “preparatory”) grief is somewhat confusing. It is not as simple as preparing for a special event, such as a wedding, in the future. People are not preparing to grieve at some time in the future; they are grieving in the present relative to a projected loss in the future.

In facing death, grieving people pay a great deal of attention to both the past and the future. This is part of their life review. In looking back, people often carefully examine themselves, the person(s) being lost, their relationships, their accomplishments, and their missed opportunities. It is as if they are reviewing a long story they have created, one full of heroes and villains, tragedy, comedy, and romance. How well was this story written? In death, how will it end? If the impending death is viewed as coming prematurely, part of the grief process can be thought of as a rewriting of this story.²¹

It seems most of us build our life stories based on an optimistic storyline in which we and our loved ones “live happily ever after.” At some point, sometimes abruptly, sometimes gradually, this storyline is challenged, with something like a “blank page” being introduced into the story.²² Patients and families may initially experience chaos in response to this blank page. A normal response to such chaos is to try to reconstitute the original storyline and to get back on track.¹ If reconstitution fails or is obviously impossible, then rewriting must begin anew. This rewriting does not begin on page one but must take up where the blank page has been introduced (although remembrance and interpretation of past events may give rise to some revision in light of the introduction of the blank page). Thus, people in grief engage in creating new storylines and new endings for stories begun years before. Major characters and their traits have been well defined. How they respond to this challenge of loss will be shaped by these traits. In this process, hidden strengths and weaknesses may be exposed. The plot must be rewritten to accommodate an ending in which not everybody lives happily ever after. This process of rewriting is the work of grief.

Bereavement

Bereavement is the grief that occurs after a death. Much has been written about bereavement grief.^{20,23,24,25,26,27,28} In many ways bereavement has served as a model for understanding grief in other situations. Grief patterns in bereavement vary greatly among different cultures and individuals.²⁹ However, the essential processes of grief are similar. Waves of strong emotions, often triggered irregularly and unpredictably, wash up. In this process a new relationship is forged between the bereaved and the deceased. Over time these waves diminish in intensity.

The reader may wonder: Why talk about bereavement in a text for clinicians, primarily physicians? In our medical culture we tend to see our relationships with the patient and family as ending with the death of the patient. Families often share this view. If bereavement is complicated (see below), this is best addressed by mental health workers. So why talk about bereavement?

Recently bereaved people, especially geriatric patients, are at substantially higher risk for adverse events, including mortality. Parkes, in a study of 4486 widowers over the age of 55, found a 40% increased mortality rate compared to age-matched controls over six months.³⁰ Bereaved individuals may present with a variety of complaints, such as insomnia, anorexia, anxiety, and body pains, that may be manifestations of grief or grief that has transformed into clinical depression.³¹ Some recently bereaved individuals may be concerned that they are “going crazy” if they see or hear the recently deceased. Rees interviewed 293 bereaved individuals and found that 47% had experienced such “hallucinations.” The majority of those interviewed found such hallucinations (visual and auditory) helpful. Rees noted, “It seems reasonable to conclude from these studies that hallucinations are normal experiences after widowhood, providing helpful psychological phenomena to those experiencing them.”³² Thus, this phenomenon is not rare and can be considered to be within the normal range of grief reactions. People may need reassurance that these experiences are common and do not reflect psychosis. On the other hand, bereaved individuals may truly be unable to bear a loss and may suffer complicated grief reactions that require professional attention.

Complicated Bereavement

Although grief in bereavement is itself a normal process, it can become complicated and harmful.^20,31,33 The best way to address complicated bereavement is to identify those individuals at high risk for it; work with them, if possible, before an anticipated death; and subsequently follow them closely. Unlike the healing process of normal bereavement, complicated bereavement is destructive to the individual. It results in dysfunctional behavior, poor quality of life, and, at times, even suicide. The more terrible the death and the more limited the coping abilities of the bereaved person, the greater is the risk of complicated bereavement. Violent or sudden deaths, deaths in which the bereaved may feel some sense of responsibility (such as the driver of a car in an auto accident), and deaths of young people result in a higher risk of complicated bereavement.²⁵ Bereaved individuals who were highly dependent on the deceased, such as elderly spouses, are at higher risk, as are those who have earlier histories of mental illnesses. Poverty and cultural isolation also limit coping abilities. The clinician can be of great service in identifying such individuals as early as possible, because counseling and supportive services can be of immense help.

One hint of complicated bereavement to watch for is grief that appears to be frozen at a certain stage. In this case grief becomes less a process than a way of life. The parents of a child who died in an accident may preserve the child’s room, like a shrine, for years following the death. The process of normal grief is not linear. Sometimes it proceeds very slowly and sometimes quickly. However, no change is worrisome. Individuals stuck in their grief generally benefit from counseling.

Working with Grieving Individuals

Although clinicians should know when to refer individuals with complicated grief, there is much they can do to address and facilitate grief when it arises. The acronym RELIEVER can serve as a reminder of simple interventions that anyone can do to assist the grieving, both in preparatory grief and bereavement:⁷

Related posts:

Special Therapeutic Issues: Hydration, Nutrition, and Antibiotics in End-of-Life Care Palliative Care Consults The Last 48 Hours Dying Trajectories and Prognostication Pain Management Chronic Illness, Death, and Dying in Modern Times