A Perspectives editor interviewed Mr N, Mr N's adult son, and his treating physician, Dr S.
DR S: I met him [18 years ago] for a new patient evaluation for low back pain. He is a retired college professor who had divorced from his wife about 3 years before…He had been on the faculty at a university as an organizational psychologist and taught there for many years. He had decided to retire early and move to California, where he was doing a lot of freelance activities and consulting as an organizational psychologist.
He was always very articulate, extremely intelligent, and very warm and caring. He's a lovely man. He was very organized. He'd always come with things written down. Since his illness, he's taken to taping all of our encounters, that's…been helpful because he tends to ask a lot of questions. When I first met him they were all medically related questions about side effects, expected time courses, and things like that. Now they're much more wide-ranging questions about life and death…He asked me 2 visits ago about how he would likely die. We've talked previously about the settings where he might die.
MR N: At 77 any time I have left is frosting…This term "life-threatening illness" isn't any more life threatening than if I didn't have an illness…It's part of what goes with living. I'm perfectly content with the thought that it's the end.
MR N'S SON: The end of life. There's nothing good about his eventually dying. There's no upside to that. There's certainly a lot of good to my having this time with him. That's a great thing.
Mr N is an articulate, reflective, and warm man. Several painful losses have served as a stimulus for self-reflection and growth. He has developed an eclectic but firm sense of values and beliefs. Mr N's unusual equanimity in the face of his death offers a "best possible" scenario for the end of life. However, despite all of the challenges associated with advanced illness, most patients have some positive feelings about their experience.1 Mr. N's story illustrates how his life's final chapter can be an opportunity for personal growth, development, and even joy, shared by his family and his physician.
Coping: The Spectrum of Psychological Responses at the End of Life
Virtually all patients nearing the end of life are faced with physical, psychological, social, and spiritual challenges. Distress about dying appears to be associated with life circumstances (eg, living alone), physical symptom burden, depressive symptoms, poor spiritual well-being, and lower levels of physician communication.2 Personal coping responses may fall anywhere in a continuum, ranging from the exceptional (like Mr N's), to the adaptive (most typical), to the dysfunctional. From an "extraordinary case" like Mr N, clinicians can come to appreciate the opportunities inherent in the dying process—possibilities that we can strive for in our care of other patients.
Psychosocial and Spiritual Assessment
DR S: I think he's somebody who has blossomed in a spiritual kind of way. He's always had a kind of a big picture view, but he's somebody whose view has gotten very large. I mean dealing with issues about the general theory of love or belief in God in the age of science. I mention those because they're typical of the kinds of conversations he wants to engage in now. He's also done a fair amount of traveling despite this illness…to visit old friends and reconnect…a lesson for all of us about what's important at the end of life…He said he didn't believe in guardian angels, but he had the feeling that there's a group around him that's holding him in some way. And I was one of the people, he said to me very proudly, who is helping to hold him. Every time he talks about his son he lights up. He has this sense that the connections he's made to other people, now reinforced by the fact that he's going to die, are really important to his thriving. He's not just surviving, he's actually thriving in the face of cancer.
Developing an optimal treatment plan for a patient with a life-threatening illness requires not only a thorough physical evaluation but also a comprehensive psychosocial and spiritual assessment that includes an understanding of what strengths and vulnerabilities the patient brings to the illness experience.3,4 Core domains of a psychosocial assessment and screening questions for each domain appear in Table 24-1. Systematic assessment of these domains allows the clinician to support good coping, identify persons at risk of experiencing unusual difficulties, and proactively attend to vulnerabilities.19 Mr N's situation at the onset of his illness demonstrates a mix of assets and weaknesses. Mr N views his illness as a random cellular derangement and does not ascribe meanings to his illness that are likely to have adverse psychological consequences (eg, punishment, retaliation). He has coped with loss effectively in the past, and after his divorce he maintained solid relationships with his ex-wife and his son. He has many friends but he lives alone and his son is far away, so he has no obvious potential caretaker should he need one later. He is experiencing relatively little stress in his daily life. Although he has no formal religious affiliation, he has a spiritual philosophy that guides his life. Mr N has had 2 episodes of depression, one after his divorce and the other in association with severe back pain, suggesting a potential for recurrence under the stress of illness. His adequate financial resources and good health insurance free him of economic concerns. He describes a close relationship with his physician that offers him a sense of security as he faces what is ahead. These fortuitous circumstances allow Mr N and his physician to focus on growth that might be achieved in the dying process. Nonetheless, like all patients with a life-threatening illness, Mr N confronts several emotional challenges.
Table 24-1Psychosocial and Spiritual Assessment of the Patient With a Life-Threatening Illness: Sample Screening Questions |Favorite Table|Download (.pdf) Table 24-1 Psychosocial and Spiritual Assessment of the Patient With a Life-Threatening Illness: Sample Screening Questions
|Psychosocial Assessment Domain ||Screening Questions |
|Meaning of illness5 || |
"How have you made sense of why this is happening to you?"
"What do you think is ahead?"
|Coping style6,7 || |
"How have you coped with hard times in the past?"
"What have been the major challenges you have confronted in your life?"
|Social support network8,9 || |
"Who are the important people in your life now? On whom do you depend and in whom do you confide about your illness?"
"How are the important people in your life coping with your illness?"
|Stressors10 || |
"What are the biggest stressors you are dealing with now?"
"Do you have concerns about pain or other kinds of physical suffering? About your and your family's emotional coping?"
|Spiritual resources11,12 || |
"What role does faith or spirituality play in your life?"
"What role has it taken in facing difficult times in the past? Now?"
"How are your spiritual needs being met while you are ill?"13
"Do you see God more as a loving presence or as a judgmental figure?"14
|Psychiatric vulnerabilities15 || |
"Have you experienced periods of significant depression, anxiety, drug or alcohol use, or other difficulties in coping?"
"What kinds of treatment have you had and which have you found helpful?"
|Economic circumstances16 || |
"How much of a concern are financial issues for you? Are you in danger of losing your job or your savings because of your illness?"
|Patient-physician relationship17,18 || |
"How do you want me, as your physician, to help you in this situation? How can we best work together?"
MR N: I regret losing my friendships and connection with the world when the time comes…the feeling of the loss for some friends and for my son, particularly…That still makes me weepy. I know eventually it will smooth out, but because I mean a lot to him he's going to be very sad. It's going to take some brightness out of his life. He's going to think of me often and things we've done together…So, it's that sadness for his sadness, for his sense of loss. He'll think of me at times and things we've done together, but I won't be there…We have no problem saying "I love you" to each other. Does that tell you something? That clearly is the most intense aspect of dying.
The preeminent coping task faced by a dying patient is dealing with loss. Grief is an intensely painful, but normal, psychological response to loss. (See also Chapter 25, Caring for Bereaved Patients.) Dying is associated with grief over both current and anticipated losses of health, the future, physical abilities, and roles and relationships. It can be challenging to differentiate the distress of normal grieving from pathologic responses, particularly depression, that require intervention. Table 24-2 compares the clinical features of grief and depression. Mr N's distress clearly lies within the spectrum of normal grief.
Table 24-2Grief vs Depression in Terminal Illness |Favorite Table|Download (.pdf) Table 24-2 Grief vs Depression in Terminal Illness
|Issue ||Grief ||Depression |
|Definition ||Feelings and behaviors resulting from a major loss20 ||Depressed mood, decreased interest and pleasure, appetite and sleep disturbance, psychomotor agitation or retardation, loss of energy, feelings of worthlessness, guilt, decreased concentration, thoughts of death, with significant impairment in functioning during a 2-wk period |
|Prevalence || |
Associated with disease progression
Prolonged or complicated grief seen in 10%-15% of patients21
Prevalence of major depression 1%-53%22-31; increased prevalence (as high as 77%) with advanced disease32,33
Pain a major risk factor and is also exacerbated by depression30,34,35
|Symptoms and signs ||Somatic distress, sleep and appetite disturbances, decreased concentration, social withdrawal, sighing || |
Hopelessness, helplessness, feelings of worthlessness, guilt, and suicidal ideation36-40 are the most useful diagnostic clues
Somatic distress, sleep and appetite disturbances, decreased concentration, social withdrawal are also common
|Other differentiating symptoms and signs || |
Patient retains capacity for pleasure
Comes in waves
Passive wishes for death to come quickly
Able to look forward to the future
Nothing is enjoyable
Intense and persistent suicidal ideation
No sense of a positive future
|Treatment || |
Patients usually cope with distress on their own; psychosocial-spiritual interventions also helpful41
Encouraging patient to speak openly about grief is helpful
Support groups useful for some patients
Prolonged or complicated grief are helped by a specific form of complicated grief therapy42
For rapid effect, an initial dose of methylphenidate, 2.5 mg orally, may be given in the morning and at noon, increasing every 2-3 d to a maximal dose of 30 mg in the morning and at noon; most patients respond to doses under 20 mg/d (adverse effects, including jitteriness and insomnia, can be mitigated by starting with a low dose and giving the last dose at noon). (No controlled trials of this indication have been published.)43
Selective serotonin reuptake inhibitor (eg, citalopram, 20-40 mg/d) for patients with a longer projected life span because these medicines can take 4-6 wk to take effect44,45
Clinicians use various constructs to describe and understand the grieving process and the psychological pathway toward death.46,47 Kübler-Ross'48 5-stage model of the response to impending death (denial, anger, bargaining, depression, and acceptance) is a conceptual model that characterizes normal emotional responses during terminal illness, which has recently been validated.49 Talking about death and dying during different phases of this grieving process appears to be associated with different outcomes. For example, when patients are in the "disbelief" or "numbness" phase, conversations about the end of life are associated with more receipt of aggressive care and worse quality of life at the end of life. (See also Chapter 25, Caring for Bereaved Patients.) This finding highlights the importance of an assessment of where the patient is in his/her grieving process in deciding when to initiate or pursue conversations about end-of-life issues. (See also Chapter 1, Initiating End-of-Life Discussions With Seriously Ill Patients.)
Grieving patients generally benefit from the opportunity to express their emotions. Understandably, patients and family members frequently try to shield each other from their grief.50 Yet, avoidance may lead to isolation and disconnection for both patients and family members. By speaking openly about grief, by asking, for example, "Have you told your son how hard it is for you to think of leaving him?" the physician can help the patient and family find a way to share their feelings.
Coping and Defending: Acceptance and Denial
DR S: He takes it a little bit at a time, which is another great thing that patients can teach those of us who are very future oriented and goal directed. He actually enjoys some of the present. He does have plans…but he is also spending a lot of time in the present. I went to a play recently…and who was in the audience but Mr N, having a great time with a lot of friends. He's spending a lot of time enjoying the weather in California, the beaches.
He really is not fearful. He's very accepting of what's ahead. He's equally intrigued by this next journey.
Weisman7,51 has described 2 modes of confronting illness and preserving psychological equilibrium. In 1 mode the patient copes, using active problem-solving approaches to deal with problems. In the other, the patient defends, avoiding difficult new realities to maintain psychological balance. These defenses can be either adaptive (reducing stress and allowing time for fuller psychological adjustment) or maladaptive (preventing necessary adjustments).
Denial is a common defense in life-threatening illness. It may impair adjustment and distort care52 and can be a marker for depression.53 Patients may refuse to accept the possibility of death, disbelieve their physicians about their prognosis, focus on unrealistic treatment goals, or fail to make necessary legal, financial, and health care arrangements. Recent research suggests that severe denial occurs in 10% of hospitalized patients with advanced cancer, with more moderate levels of denial occurring in an additional 18% of patients.53
When confronted with a patient manifesting denial, the physician should consider whether the denial is helping the patient deal with the illness. When the denial is indeed helping the patient to cope, it need not be addressed, but when it is causing problems or is likely to lead to them, the physician may need to challenge the patient's denial to achieve a greater good. An example might be, "I know that making a decision about who will have custody of your children is extremely painful, yet I want to help you have as much control as possible over this important decision. If we only plan for your survival, we may lose that chance." Clinicians agree that denial generally should not be challenged when a patient is in the midst of a crisis because doing so risks undermining the patient's psychological equilibrium; rather, it is often better to address denial when a crisis has passed, and the patient may have recovered more of his/her inner emotional resources.
Requests for Hastened Death
Thoughts and appeals for hastened death arise regularly28 but should be viewed as a request to open a dialogue about dying and perhaps as a sign of depression or concerns about losing control. (See also Chapter 30, Responding to Requests for Physician-Assisted Suicide.) Most wishes for hastened death are transient.54 Exploration of fears, concerns, and wishes for end-of-life care, and an assurance that the physician is willing to discuss these issues, may provide enough security that the desire diminishes. In Oregon, for example, where physician-assisted suicide is legal, only a small proportion of patients who initiate conversation about hastened death with their physicians actually end their lives in this manner.55 In 2008, for example, 88 patients received prescriptions for medications to use for assisted suicide; 54 patients died from ingestion of these medications.56
Comprehensive psychosocial assessment, including referral to a psychiatrist to assess depression, is essential for all patients who express a sustained desire for hastened death. Such exploration usually, but not always, points to ameliorable suffering.57 Depression, anxiety, and delirium, all common among dying patients, are discussed in Box 24-1.
Box 24-1Common Psychiatric Disorders in Dying Patients |Favorite Table|Download (.pdf) Box 24-1 Common Psychiatric Disorders in Dying Patients
|Psychiatric disorders represent abnormal responses to the stress of terminal illness and are distinct from the normal sadness, grief, and worry that characterize the dying process. A 2007 systematic review suggested that 14%-35% of cancer patients with advanced illness fulfill diagnostic criteria for adjustment disorder, 6%-8% meet criteria for anxiety disorder, and 14%-31% have depressive disorders.99 An additional 9% had organic mental disorders (delirium).100 Patients with other terminal illnesses demonstrate similarly elevated rates of psychiatric disorders relative to healthy populations.101 |
|Frequent reassessment of psychological symptoms is essential because psychological state fluctuates during terminal illness.102 Symptoms should be treated actively. Finally, physicians should be aware of their own therapeutic nihilism ("I'd be depressed, too, if I were dying" or "What is the point of trying a new drug? She probably only has a week left.") that may keep them from offering potentially helpful treatments and that conveys a sense of psychological, if not physical, abandonment. |
|Depression is not normal in the terminally ill and is both underdiagnosed and undertreated.44 Experts estimate that rates of depression increase as patients approach death.103 Depression impairs the patient's capacity for pleasure, meaning, and connection. It erodes quality of life, amplifies pain and other symptoms, causes anguish to family and friends,104-106 and is a risk factor for suicide.28 |
|Many dying patients have neurovegetative symptoms, such as poor appetite, sleep disturbance, lack of energy, and diminished concentration. Thus, emotional symptoms, such as hopelessness, helplessness, worthlessness, guilt, anhedonia, and suicidal ideation, are better indicators of depression in this setting (Table 24-2). |
|Physicians should have a low threshold for initiating treatment. Although no controlled clinical trials evaluate the efficacy of combined interventions in this patient population, most experts recommend an approach that combines supportive psychotherapy, patient and family education, and stimulants and/or antidepressants (Table 24-2).44,107 |
|Anxiety and fear surrounding death and dying are common. Although diagnosable anxiety disorders are found in less than 10% of patients, significant anxiety symptoms occur in approximately 25% of patients with life-threatening illness.100,108 Anxiety can often be assuaged by direct exploration: "What are you afraid of? What do you imagine dying will be like? Where do these worries come from?" Ongoing exploration and support are the core elements of treatment. Persistently high levels of anxiety often respond to low doses of a benzodiazepine (eg, clonazepam, 0.5 mg orally twice daily). Behavioral treatments (eg, meditation, relaxation training) may also be useful adjuncts. Anxiety and depression often have overlapping symptoms, and both can respond to selective serotonin reuptake inhibitors. Substance abuse and withdrawal, undertreated pain, dyspnea, treatment with corticosteroids, and undiagnosed delirium can also contribute to anxiety symptoms.109-112 |
|As many as 85% of patients with far-advanced disease experience delirium as a terminal event. It requires early diagnosis and aggressive treatment because it is intensely distressing to the patient and family. The cardinal symptoms are disorientation, waxing and waning levels of consciousness and attention, disorders of perception, memory, emotion, and behavior, as well as disturbances of the sleep-wake cycle.110,113,114 Delirium is regularly misdiagnosed as anxiety, depression, or psychosis.115 Common causes include medications, organ failure, infection, metabolic derangements, and the effects of disease on the central nervous system. Delirium is often multifactorial and may be irreversible; opioids, benzodiazepines, and steroids often contribute to the clinical picture.116,117 Having family members present and ensuring that the room is well lit and contains familiar objects sometimes help settle the delirious patient.118,119 When these measures alone do not provide effective symptom relief, neuroleptic agents should be considered. Haloperidol,120-122 olanzapine,123 risperidone,124 and chlorpromazine125 are all useful agents. (See also Chapter 11, Agitation and Delirium at the End of Life.) Chlorpromazine may be especially useful for bedbound patients because of its relative lack of parkinsonian effects and because it can be administered orally, intravenously, and rectally.126 Furthermore, its sedating and antipsychotic effects and its tendency to cause orthostatic hypotension are less of a disadvantage in bedbound patients. Benzodiazepines alone are generally ineffective in treating delirium and may actually contribute to worsening cognitive impairment.127 However, their use as an adjunct to neuroleptics may speed the resolution of agitated delirium and reduce extrapyramidal adverse effects.128 |
|Indications for Referral |
|Comprehensive end-of-life care is best provided by an interdisciplinary team that includes medical, nursing, psychosocial, and spiritual expertise because patients and their families have a broad array of needs and no single clinician is likely to be able to meet all of them. However, patients with persistent pain, unusually intense grief, depression, anxiety that is not assuaged by exploration and reassurance, delirium, substance abuse, and requests for hastened death require the expertise of a psychiatrist.57 |
The Art of the Possible: Patients' Views of a "Good" Death
When the physician has addressed physical distress and potentially dysfunctional responses to terminal illness, it is then possible to focus on helping patients achieve their unique vision of a "good" death. To be sure, not every patient will seek or be able to invest emotionally in the possibility of discovery and transcendence in the dying process. But it is not rare, and as Mr N's story reveals, his physician's care and his own emotional strengths have enabled him to focus on the goals that many patients identify as central to a "good" death58-60:
Optimizing physical comfort
Maintaining a sense of continuity with one's self
Maintaining and enhancing relationships
Making meaning of one's life and death
Achieving a sense of control
Confronting and preparing for death
Optimizing Physical Comfort
MR N: Fundamentally, I'm in good shape. I don't have any real claims that I'm not. The edges are sort of murky now and then from the [chemotherapy's] side effects, but otherwise, I'm fine.
Patients anticipating death are concerned with minimizing physical distress. Pain and other symptoms, as well as the prospect of future suffering, represent a threat to the integrity of the self and undermine coping.61 In a study of patients diagnosed as having advanced cancer, inpatients had an average of 13.5 symptoms and outpatients an average of 9.7 symptoms.62 Psychological distress commonly contributes to physical symptoms such as pain,63 lack of energy,64 and dyspnea.65 Assiduous attention to pain and symptom management66,67 can lessen psychological distress and enhance coping. Education and reassurance for the patient and family are also essential.
Unlike most patients with advanced cancer, Mr N's symptom burden is low. Proactive care has allowed him to focus his energies on psychological, social, and spiritual concerns. In contrast to the "total pain" sometimes experienced by patients with unresolved psychological and spiritual issues, depression, and anxiety, Mr N's psychological equanimity may also be playing a role in minimizing distress associated with physical symptoms.68
Maintaining a Sense of Continuity With One's Self
MR N: I haven't had any occasion to significantly change my sense of where I am and what's going on. From very early on, I've had to appreciate life as problematic. Tomorrow isn't promised by today at all…and I should say that a lot of the work I've done…has been refined by having cancer, but it hasn't started with that. It wasn't suddenly I realized I had to sort these things out. But being available to other people's love and care, that's come with this last year and has taken very deliberate doing.
MR N'S SON: I don't think it's changed him a lot, actually. He's always been somebody that's felt he's really lucky and he really appreciates life and day-to-day things…I think he's trying to focus on things that seem the most important to him, his friends, things that he wants to read, things that seem valuable to him at this stage. He tries to be self-aware too. As he's been getting older, he's been aware that he has a limited mortality. This is his perspective, not mine.
DR S: I help manage his biomedical concerns, but in turn he's teaching me a lot about the best way people can transform and grow at the end of their lives.
The physical and psychosocial losses that often accompany fatal illness can shatter one's sense of wholeness and integrity, which are key components of emotional health.69 Death, of course, represents the end of the self as we know it. A dying person may feel that his/her identity as "dying" overwhelms any appreciation of living today and in the future. Mr N's ability to feel like himself, even in the face of his illness, both reflects and enables his good coping.
Like Mr N, many dying patients strive to be valued in the present and are gratified to have the opportunity to contribute to others through sharing their wisdom, modeling a meaningful path through the dying process, teaching,70 or participation in a clinical trial.71 Mr N's involvement in the interview on which this chapter is based is an example of one form of teaching. In addition, Dr S's appreciation of Mr N's outlook helps the patient feel valued and connected to others.
The physician can also help the patient connect with his/her inner strengths by reviewing past experience of strength and mastery and by offering a vision of how the patient can be his/her "best self," thereby maintaining a sense of personal integrity and value. Questions designed to elicit patient reflection on these issues are presented in Table 24-3, part A.
Table 24-3Useful Questions for Clinicians to Consider Asking Patients |Favorite Table|Download (.pdf) Table 24-3 Useful Questions for Clinicians to Consider Asking Patients
|A. Mobilizing patients' coping strengths and inner resources |
|"What will help you feel that you have lived up to your own ideals in the way you've dealt with your illness/your death?" |
|"What could you do that would help you feel that this has been a meaningful time for you and the people you care about?" |
|"How do you want to be remembered by the people you care about?" |
|"What are some of the ways you have found yourself growing or changing or hoped that you could grow or change in this last phase of your life?" |
|"What are some of the moments when you've felt most discouraged and downhearted as you've faced your illness?" |
|"What are the biggest barriers you find to feeling secure and in reasonable control as you go through this experience with your illness?" |
|"What are the resources and strengths within you that can help you cope?" |
|B. Eliciting a patient's goals for healing and strengthening relationships |
|"Are there important relationships in your life, including relationships from the past, that need healing or strengthening?" |
|"Are there relationships in which you feel something important has been left unsaid?" |
|"Do the important people in your life know what they mean to you?" |
|"Are there stories, values, or ideas that you want to transmit to people as part of your legacy?" |
|"Are there ways that you can help your family now to prepare for and deal with your death?" |
|"How might you be able to continue to be a presence in the lives of people you love after you are gone?" |
|"How would you like to say goodbye to the people who have been important to you?" |
Maintaining and Enhancing Relationships
MR N: It's always very moving and surprising to get a note from somebody about how you've affected their life or changed their life back 20 or 30 years ago. I know with my son I've influenced his life, which is a great satisfaction. What happens to that I don't know. No one knows in terms of what they do, what they become. What happens to the next generation. I don't have any illusions about being an icon. These things do attenuate, they do become absorbed. They disappear as anything distinctive. I'm content with that. If people have been helped by me, I'm content…I've been very good at giving, but as most wounded healers not so great at receiving by any means.
I have wonderful friends who are really loving and caring and look after me, and it's genuine. And I have my beloved son and my daughter-in-law and my former wife. I'm surrounded by people who enjoy me and care about me, that I've been important to and who are important to me. What this last year has provided me with is the occasion to be deliberately open to receiving other people's love and care…and I'm delighted when it happens.
By no means have I overcome all of that, but it's in that direction. I've come to understand, not only understand but feel, something more of what it must be like for them to love me as well as my relation to them. That's been a delight. It requires paying attention. I can be with them, and after a conversation or hanging up the phone, I have to remind myself that I don't always know about them in relation to me. It requires really paying attention,…[but] if I responded to all their caring I wouldn't have any time. Want to have lunch? Want to do this? Want to do that? I do, yes, but I also want to spend time by myself…partly because of my energy and partly because I do want to spend time by myself.
MR N'S SON: I can come out and visit him a lot. Think about him and talk to him. Appreciate him and make sure he knows how I feel…Hearing about his life, his childhood, college days. What he thinks is important. It's not really an agenda. It seems more natural that I would want to know, and he would want to tell me. Realizing that he's a shield in the world. If he wasn't there I would have had a different relationship to the world…It's not until he really dies that I'll be changed in that way.
Relationships are changed by serious illness. Often, there is an enhanced appreciation of the importance of loved ones and a wish to connect more deeply. At the same time, physical dependency can foster fears of being abandoned and of being a burden.
Concerns about family members are central to patients. In 1 study of terminally ill cancer patients, between 92% and 97% rated the following domains as extremely or very important: "feeling appreciated by my family," "saying goodbye to people closest to me," "expressing my feelings to my family," and "knowing that my family will be all right without me."72 Many patients value the needs of their families particularly highly during this period; indeed many patients report that they would prefer to have decisions about their end-of-life care made jointly with family members and would defer in some cases to family members' preferences.73,74 Patients and family members are occasionally at a loss as to what to talk about as the patient enters the terminal phase of illness. Physicians may encourage the patient and/or the family to consider saying explicit goodbyes, further strengthening connections at the end of life. Questions to open such explorations are presented in Table 24-3, part B.
Mr N's experience illustrates a comfortable adaptation to his increased dependency. He frames receiving from others as a new opportunity to learn about himself, allowing him to cope without feeling diminished. Patients often need reassurance that this kind of dependency is not only acceptable but allows family members to feel a sense of purpose and empowerment by providing care.75
Nonetheless, recent literature demonstrates that the strains of caregiving include an adverse impact on caregivers' work and finances76 and elevated rates of depression associated with the heavy burden of caregiving.77 One study77 demonstrated that caregivers whose physicians listened to their needs and opinions about the patient's illness were significantly less likely to be depressed and to report that caregiving compromised their personal lives. Regrettably, physicians often do not attend to these issues.78-80
Additional research suggests that patients' and caregivers' moods are interdependent, with higher rates of depression in caregivers of depressed patients compared with nondepressed patients.81 Early discussions about end-of-life issues with patients appear to be associated with improved quality of life at the end of life and with reduced rates of bereavement-related morbidity in survivors.82 Helping the patient and family prepare for and cope with these challenges and stressors is not only a humane component of end-of-life care but also an important step in facilitating a good death for the patient and optimal adjustment for survivors.
Making Meaning of One's Life and Death
MR N: I want to be remembered as a human being who's cared more about caring for people…and what happens in society…than about becoming rich and famous…I spend a fair amount of time in meditation.
DR S: I think as people live so they die. So there's some aspect of Mr N that is particular to him, very individual, very unique. His particular personality, his intelligence and articulate nature, etc. But also I think beyond that there is something that we can all learn from his abilities to show us how important human connection is in thriving. Despite the fact that he lives alone, he is not socially isolated. This man is highly connected all over the world to people, and I believe that one of the reasons he's thriving is that he is so much loved and feels the 2-way nature of that connection and love. It's helped him to survive and to thrive. I think that's a lesson that all of us need to learn. I also think that even though he's not a religious man he's a very spiritual man. The fact that he's reading these wonderful books and talking about this very openly is one of the more remarkable things. I can't think of another patient with whom I've had these kinds of conversations as frequently. We each have 4 quadrants of life: the cognitive, the psychological, the physical, and the spiritual. He's spending a lot of time in the spiritual quadrant. I think that's been not only one of the keys to his longevity, but also I think it's been a 2-way street. It's been the way that he's been able to help us. We talked, for example, about Henri Nouwen's book, Our Greatest Gift: Dying and Caring, which I gave him. He really liked that book even though I think he's not Christian. He clearly is somebody who gets the idea that the dying have a lot to teaching those caring for them. It is hand in hand. He's busy doing that. He's not shy about it. Not inhibited. He's very open…I haven't felt at all any hesitation to talk to him about my own son's death. He's been around when my brother's gotten ill and my mother and mother-in-law died. He's a friend. He's been with me for 18 years. He's seen me rush out of town and he understands that I get it. I haven't really dwelt on that stuff with him except insofar as to let him know that I get it…[The lesson for me has been] that while life is transient and full of suffering, it's the meaning you make of the suffering that counts.
Patients frequently question whether they have accomplished something worthwhile and what kind of legacy they will leave.83 The process of leave-taking provides an opportunity for summing up a life. Memories, values, and wisdom are shared, bringing meaning and ensuring continuity to those who are left behind. The process of life review, initiated by Viederman, provides a useful framework for sharing legacies and making meaning.84,85 Because our society generally shies away from direct confrontation with death, the physician often must gently raise these issues, explore patient resistance to addressing them, and support risk taking.
MR N: I know that as with everything else there is creation and destruction, which makes for creation, which makes for destruction, and I'm part of that process.
Mr N relies on his scientific understanding of the universe to make sense of and to accept death. Finding a sense of meaning or transcendence ameliorates the experience of suffering.86 Many patients find this sense of meaning and transcendence within a religious context. Others, like Mr N, experience a broader humanistic or spiritual connection with the human condition.
The physician can help focus these issues by asking questions such as "How do you understand what is happening to you?" "What would allow you to feel that going through this has a purpose?" "Do you have traditions or beliefs that can help you deal with your illness?" Chaplains, psychiatrists, psychologists, and social workers have special expertise in exploring these concerns. (See also Chapter 29, Spiritual Issues in the Care of Dying Patients.)
Achieving a Sense of Control
MR N: I've had ample opportunity to reflect, meditate, and read. Rachel Remen's book Kitchen Table Wisdom: Stories That Heal is wonderful…John Tarrant's The Light Inside the Dark is an extraordinary book…There have been times I've stood in the shower with my eyes shut wondering if I went blind would I be able to take a shower, just as an experiment. Not that I'm threatened by that, but it's a possibility. Yes, there are threats. But at the same time, threat is implicit in openness and uncertainty, but it doesn't mean that's the only thing that's there. For me, they're both there. It's both/and, yin/yang, not either/or. That's been true for everything in my life. It hasn't changed my spiritual perspective the fact that I have cancer. For me the universe is a mystery. To try to explain it, to me, is to trivialize it. All I can do as a human being is what I can do as human being,…a biological creature. This hasn't changed my sense of my relation to the universe. It has in a way deepened my sense of that connection, of that mystery because I'm more aware every day of my biology and what's going on…I mean beyond what humans can comprehend, I think there are limits to what we can comprehend just because we are built biologically. That means I'm content to be in it. I don't have to explain it. I don't have to expect anything of it. As we said earlier, life threatening goes with living.
I don't feel at odds with [this cycle of life]. Sometimes I'm mystified by what the connection is and then that's part of what I try to explore. That is, to the extent I can as a human being. I'm comfortable in that I think fundamentally living and dying are the way the universe is whether it's an exploding star, or a flower, or a fruit, or myself. I don't fight it…I'll live as long as I can and well as I can and when the time comes, it's time to go.
DR S: We've talked about the setting for his death. He's actually visited the hospice…and the inpatient palliative care unit. We've talked about his most desired scenario, which is to die at home with his family, hospice, and me taking care of him.
Most patients have definite ideas about the care they desire at the end of life. Comprehensive clinical information about the illness and its range of reasonable treatment (or nontreatment) options can provide an important sense of security and control.87,88 As is true for Mr N, this wish for control can extend to the details of dying and may include attention to rituals after the death. The physician's equanimity in the face of approaching death and the assurance of continuing care lessen the patient's fear.
Often, patients want to engage in broader discussions about the various management options and how well these options meet their values and goals.89 Yet some prefer to shield their families, or even themselves, from difficult decisions. Physicians should be guided by explicit discussions with patients about their preferences for information and participation in the decision-making process.
Confronting and Preparing for Death
MR N: Maybe in some profound sense I'm denying fear. I've built this elaborate rationale. What happens after I die is part of the mystery. I'm an agnostic…I'm perfectly content with the thought that it's the end of whatever. I'm planning to be cremated and my ashes scattered around in order that they go back into the universe just the way I got them from the universe. What is nice to have in mind is that it's not the end of what happens to the molecules that make me up. They go back into the soil.
MR N'S SON: It [the idea of his dying] went from being something horrible to being something that's just there. I try to see it the way he sees it: that at some age it's what's going to happen to everybody…The end of life. It's certainly changed a lot. There is a lot less gloom hanging over. A lot less desperation.
DR S: I've been interested that he really is not fearful. He's very accepting…and equally intrigued by this next journey.
Recent pilot research with a population of hospice patients suggests that a brief intervention designed to prepare patients for the end of life was associated with improved functional status, reduced depression and anxiety, and enhanced preparation for the end of life.90
Patients and their families (and often their physicians) usually confront death episodically. Even when patients are speaking optimistically about their illnesses, there are often clues that darker thoughts or fears are also present. Although physicians may be reluctant to explore these thoughts for fear of taking away hope or causing the patient emotional distress, patients value the opportunity to achieve "completion" of their lives through preparing for death.58 Indeed, the literature suggests that talking about dying does not create increased psychological distress and is often helpful.82,91 For some patients, addressing practical issues, such as putting financial affairs in order or planning a funeral or memorial service, represent ways of taking care of survivors. Mr N has completed a durable power of attorney for health care, visited 2 inpatient hospice units, and made plans for care he may need in the future. Other patients may seek to explore the psychological aspects of death and dying in depth; several psychotherapeutic approaches to enhance dignity and well-being have been developed.92-94 Preparing for death also often entails a patient's desire to understand what is likely to happen as death approaches, as well as the ability to speak frankly with his/her physician about prognosis.72 Mr N's calm acceptance of what is ahead has likely been shaped by the relatively comforting images his physicians have offered him about what dying will be like.
MR N: According to my doctors, if it's the pancreatic cancer that does me in I'll go on with a good quality of life until maybe a month before, and then there's a quick fall off… That is an incredible way to go.
Reassurance that the physician is committed to being with the patient throughout the dying process reduces anxiety about what lies ahead,95 communicates a sense of security, and may (partially) ameliorate the loneliness of the dying process.
Rewards for the Physician
DR S: I really like seeing him because no matter how distraught I am about that particular day or feeling overwhelmed…I feel so much better after each visit with him. It's almost like he's a doctor to me…[His oncologist] always writes me. Everybody likes this man and is learning from him about how to deal with life in the face of terminal illness.
Caring for the dying is emotionally trying, challenging the physician to be present in the face of suffering, to find ways of using one's self therapeutically when medicine's technical and curative limits have been exhausted, to remain a calm presence in the face of profound human crises, and to grieve repeated losses. At the same time, this work offers deep professional satisfaction.96 It provides a singular experience of being of service to people at the most difficult moments of their lives. The gratitude expressed by patients and families ameliorates the frustrations and sadness that are sometimes inherent in this work. When patients have "good" deaths, physicians can feel a sense of accomplishment and pride. Finally, many of the skills that a physician acquires in caring for the dying are highly generalizable to other areas of medical work. They make physicians better communicators and help them to better understand and treat suffering in other realms. In addition to the professional satisfactions of providing good end-of-life care, seeing life from the perspective of someone who has limited time enhances clarity about personal priorities. The intimacy of the experience offers deeper understanding about the nature of life, an appreciation of the gifts of being alive, and constantly renewed inspiration and hopefulness about human resilience.