Shortly after Mr R's death, a Perspectives editor separately interviewed Mr R's wife (Mrs R), daughter (Ms L), and home care nurse (Ms P).
MRS R: The first decision was to absolutely follow his lead and he was extraordinarily strong. He always had been the strong one of the two of us. He was intent on beating this disease, even though the numbers said only 4% survived 5 years with pancreatic cancer. He was determined and, as many of us agreed, knowing him, he might just be the one able to do it. In terms of personal response, I was as hopeful as he. I knew I would take care of him myself because we had always done things together. We worked together as president and vice president of a company that my husband had started for 30 years. We worked together, we played together, and we did everything together, I guess since I was 18 years old. In addition, my husband was gradually losing his vision. Every time he had a procedure during this process, and there were, of course, many of them in the 11 months that he lived with the disease, every time he was put under, he lost more vision. Because he was legally blind since the early 70s, I had always been by his side. There was never a question that I wouldn't continue to be so during this period.
MS L: I think that physicians need to be as aware as they can as to how alone and ignorant the family and the patient feel. For example, Dad's physician was sort of ominously saying with raised eyebrows, "The bilirubin is going up, the bilirubin is going up." But we had no context for that…We knew it was bad, but we didn't know if that meant that in 6 months he was going to be in trouble or in a week he might be in trouble.
MS P: When they go into the hospital, they become patients, but they're really people. In the hospital you can forget: they're all in the same kind of rooms; they're all in the same kind of gowns; they all have tubes and things hooked up to them. But at home, they're people. They're in their house, they're surrounded by their photographs, the things they've worked for all their life. They're people first, and then they're patients.
I always recommend hospice, and that comes from my own personal thing because I don't like to see people die. None of us do. What I always recommend to people is that they talk to hospice. And, you try to get them to do that before they're groping for their last breath. What usually happens with our patients is they don't do it. They don't want to do it. You can't have both.
As with Mr R, the story of a dying patient is often also a story about loving family members. Increasingly, death in the United States is preceded by family caregiving—"informal" support and lay medical care provided by family, partners, and friends.1-5 About one-quarter of adults in the United States report providing informal caregiving,6 including helping with transportation, shopping, homemaking, emotional support, nutritional care, nursing care, personal care, and financial management.1,2,7,8 Family members, almost always women, provide nearly all of the care patients receive at home.1,7 The prevalence of long-term family caregiving is likely to increase with the aging US population, and the increasing number of diseases managed over many years in the outpatient setting.8,9
In light of the pervasiveness and importance of family caregiving, the physician's relationship with family caregivers deserves attention. Mr R's illness richly illustrates both the joys and the challenges of family caregiving. We describe the burdens of family caregiving, outline basic physician responsibilities in the support of family caregivers, and, additionally, identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life.
The Burdens of Family Caregiving
MS P: You always go though a checklist, but your initial checklist is never really accurate. If it's the first time that you're meeting a patient, they're pretty anxious. They've got strange people coming into their home and they don't exactly know what homecare is. When you start bringing up chemotherapy and [intravenous] fluids, they're a little bit overwhelmed. But based on my experience, it's incredible what people at home can do and what they want to do just to keep people at home. So, you go through a checklist, but it's ongoing. And the things that you think people can't do, they can really rally around and do it.
Are their technical skills going to be good enough, do they have enough common sense, do they know enough when they're in over their heads and they're going to call for help? Do they want to do it? That's 99% of it. If they want to do it, then for the most part they can do it. Because we're not teaching them process, we're teaching them technical things.
MRS R: With all of these treatments, or procedures, there are no needles…you just screw on the plastic. I was a professional person for 30 years and you learn to cope and you learn to learn. So, I was not insecure in doing this. And the nurse was extraordinary. She would write the directions down to the last detail for me, so if I ever got flustered or nervous, I could follow exactly what she told me to do. So, it wasn't a problem. I never wanted to be connected to the medical world, except in terms of knowledge. So, it wasn't something that came naturally, but you say you're going to do it and you do it.
To me, it just never stopped. It wasn't the care, it was the whole commitment. It never went away.
MS L: She really wanted to take care of him and because she wanted to so badly, we wanted to make it possible. We just knocked ourselves out to do everything we could to support her. We agreed, my brother and I, that if it ever got to a place where he was at risk because my mother couldn't manage something, then we would step in. We never felt that it got to that point. She's incredibly competent and capable. I have to say that I couldn't have done it myself. Even though I was the only one in town, my brother made numerous trips, both with his wife and without his wife. He was incredibly helpful and supportive and we were on the phone all the time. That was really tremendously helpful.
Caregiving can take as little as a few hours per week but commonly is equivalent to a full-time job, with 20% of caregivers providing full-time or constant care.6,10,11 The most recent evidence suggests that family caregivers spend an average of 43 hours a week providing care.12 Mrs. R reported spending approximately 10 hours a day tending to her husband, but the sense of responsibility was never ending. The length of a patient's illness before death and the trajectory of functional decline (and concomitant caregiving need) are difficult to predict, particularly in noncancer conditions.13 The administrative and logistical needs can be enormous: families typically must coordinate numerous medications, treatments, clinical and social services, as well as the needs of multiple family members. At times, families may feel as if they are "reinventing the wheel," with each individual family trying to identify local services even though many in their community have struggled with the very same issues.
MRS R: It became an enormous job once the gastric tube was placed because it was placed with equipment that didn't work. The nurse was the one who saved us again. You could not flush it successfully because the pieces would not go back together right, they would slip out. It was awful. That was probably one of the worst parts of the whole thing. But the nurse went to the hospital to the [gastrointestinal] laboratory and searched in the home health care equipment and found a way that we could hook it up so that it worked. But I did spend lots and lots of hours flushing this dumb tube that never worked right, and there was a big infection, which we also had to take care of and change dressings constantly.
He just couldn't move, and I wasn't strong enough to help him. It only became scary for me at night when there were just 2 of us here, and I realized that if anything untoward occurred, I wouldn't be able to do anything for him. That was a feeling that I had a lot of trouble with.
MS P: At one point, he was on TPN [total parenteral nutrition], so we were teaching her how to do the TPN. And with her, her poor hands…here's a woman that has severe rheumatoid arthritis and is on injections, but she insisted on learning how to do it. So, I taught her how to do it, not that she needed to do it, because we were there every day. I took 3 days to teach her how to do it, and she was perfectly capable of doing it. But, when I would go there, I would tell her, "Oh, you know how to do it, just let me do it." Kind of taking over. Teaching her so that she had the power and control to do this. But then saying to her, "You know how to do this, but I'm here, so give me something to do."
Nearly one-fifth of family caregivers of family at the end of life report significant physical strain in their work.12 Laborious caregiving is often performed by people who are themselves elderly, ill, and disabled.6 In this case, Mrs R has severe rheumatoid arthritis. Caregivers usually have no training in moving, lifting, or turning seriously ill adults, yet they routinely perform these strenuous physical activities. As a result, family caregivers are at significant risk of physical injury. Fortunately, Mrs R realized that her husband "couldn't move and I wasn't strong enough to help him" and asked her daughter and the nurse for help.
MS L: Yes, we talked a lot about it, and we certainly knew that we would be there to support him. My brother lives in Washington, DC, but it was assumed, and we knew from our other experiences as a family, with my mother's health and my father's prior surgery, that he would be home. Because we knew that this would be a long hospitalization, we made a plan that we would trade off who stayed over in the hospital with him. My mother has a lot of health problems, and we were concerned about how that would be for her if she were trying to stay there every night. We talked about how we felt. I felt very strongly that he should not be left in the hospital without a family member. I think, we sort of convinced my mother about that. I treat a lot of physicians, and I hear a lot about things that happen, and I didn't think that he should be left alone.
Caregiving creates an uncompensated financial burden for family members, both in outright expenses and in lost income and benefits.6,14,15 In the United States, yearly family caregiving costs range from $3 to $6 billion for diabetes,4 more than $6 billion for stroke,16 and $65 billion for patients with Alzheimer disease.17 A recent landmark study showed that the annual out-of-pocket costs of caregiving to families ($5531) are much higher than prior estimates and more than the annual household expenditure for health care and entertainment combined.15 On average, families spend 10% of their income providing family caregiving. The costs of long-distance caregiving are even higher. The economic disruption of family caregiving can be profound: 20% of family caregivers must quit work or make major life changes and 31% lose most or all of their family savings as a result of caregiving.2 African American and Hispanic caregivers are more likely to experience economic disruption compared with whites.18 The economic burden is similar within both managed care and fee-for-service health care systems.19 Government support for family caregiving is limited: the Family Medical Leave Act of 1993 guarantees only unpaid leave to care for a seriously ill spouse, son, daughter, or parent; only a few states allow those eligible for Medicaid's personal care benefit to receive a cash allowance to purchase their own care and hire friends or family to provide it.
Patients and family members may feel differently about the intense costs of caregiving. Patients often fear being a burden to their family, despite the family's willingness to provide care.20,21 Family economic hardship is associated with a preference for "comfort-only" care over life-extending care.22 Substantial caregiving needs have even been associated with an increased likelihood of patients considering euthanasia or physician-assisted suicide.23,24
Caregiver Emotional Burdens and Mental Health Risks
MS P: I just kind of helped them through,…and I talked to the daughter a lot, "Your mother's exhausted, she's all over the place. She's not getting her rest, she's going to collapse. I'm more worried about her than I am about your dad." The daughter knew that, and the son knew it too. The son would come in from Washington to try to help out. But…they've got to figure it out themselves. You just kind of help them along. Whether it's having a cup of coffee with them. Going there even though you don't feel like you're really doing anything, you know that you are. Because when you walk in the door, you get that sigh, that "I'm so glad you're here" sound.
Caregivers often bear an incalculable emotional burden for their work. Although many enjoy a profound sense of privilege and derive deep satisfaction in this role, sadness, guilt, anger, resentment, and a sense of inadequacy are also common and understandable reactions. Exhaustion, financial strain, disrupted usual activities, and continuous caregiving contribute to significant mental health morbidity, including anxiety, depression, and even cognitive dysfunction.25,26 These burdens appear to increase as patients' autonomy lessens.27 Although selection bias may lead to overestimates of the prevalence of caregiver depression, a number of studies document that as many as half of all caregivers have clinical depression, with 61% of "intense" family caregivers (those providing at least 21 hours of care per week) experiencing depression.28,29 In fact, depression among family caregivers may even be more common than among their ill loved ones.30 Caregiver wives appear to be more likely than caregiver husbands to experience depression, although men may be less likely to report their strain.31,32 Family members of patients in the intensive care unit (ICU) are at high risk for mental health morbidity, including depression, anxiety, posttraumatic stress, and complicated grief.33
Health Risks for Caregivers
MRS R: My health isn't red hot, but I didn't worry about it at all.
Family caregivers tend to put the needs of the ill person ahead of their own, minimizing the severity of their own problems and forgoing or delaying their own health care.34 Caregiving is associated with poor sleep,35 impaired neurohormonal and inflammatory function,36 and even increased cancer risk.37 Caregivers are at particular risk for worsened health if they have poor baseline health or limited education and if caregiving means significant loss of social and leisure time.5,38 Notably, caregiving is also associated with increased caregiver mortality.39 In a 4-year study of 392 caregivers and 427 noncaregivers older than 66 years, caregivers who experienced mental or emotional strain had a mortality risk 63% higher than noncaregiving controls.40 Even a single hospitalization of a spouse is associated with an increased risk of death for the nonhospitalized partner.41
The Physician's Responsibilities to Family
Given the significant risks of family caregiving and the goal of comprehensive patient care, physicians clearly have a role to play with the families of patients at the end of life. In clinical practice, however, physicians may be uncertain about their relationship and responsibility to the family. Sensitively negotiating family issues can be difficult for physicians but is intensified when families challenge the physician's authority, are plagued by their own disagreements, raise the specter of litigation, or are culturally or religiously diverse from the physician.42,43 Physicians also must be alert to the fact that their own patients, even those with advanced illness, may actually be serving as the caregiver for even more seriously ill relatives.44,45
A physician's legal obligations regarding the family are minimal: physicians are required to address the wishes of appropriate patient surrogate decision makers and to report patients they believe are being abused or neglected. In fact, the physician's role should be more comprehensive. The Council on Scientific Affairs of the American Medical Association argues that family caregivers and physicians are interdependent and should create a care partnership.46 The patient's primary care physician has a key linkage role, assessing the caregiver as well as the patient in a comprehensive home-based approach that includes training caregivers, validating the caregiver's role, and case management.46
Physicians must recognize that family caregivers provide an instrumental component of patient care and support them sufficiently. Physicians can assess family caregivers with a simple screening question, such as "How is the caregiving going for you?" or "How is the family doing?" Vulnerable caregivers should be evaluated for their ability to provide care without putting their own health at risk,5,47,48 and physicians should refer overwhelmed caregivers to support services and to the caregiver's own physician. Hospitalists and palliative care specialists can contribute to discontinuity of medical care at the end of life, and all clinicians must pay particular attention to ensuring clear communication with each other and with family during "hand-offs" between physicians and across care settings.49
Physician Opportunities to Serve Families
Beyond the basic responsibilities, working both individually and as part of an interdisciplinary team, there is great potential for physicians of patients at the end-of-life to provide important and perhaps even life-sustaining support to family caregivers. Empirical research and the clinical experiences of experts suggest that there are at least 5 areas of service that physicians may offer to families.
Excellent Communication With Family
MRS R: [We moved him] almost more to avoid having to worry about not having a doctor who we could talk to than because he was in such bad shape.
MS L: I don't know how much the doctors knew…I think it's always difficult for them to know how somebody is going to do with one of these interventions. It's always hard to present a family with all of the gory details. But I think what would have been helpful would have been a conversation where the doctor said, "His stomach really is not functioning right anymore. We're going to try to preserve his ability to eat. But it's possible that what's happening now is that he is in a process where he is losing this process completely. Having the G-tube might give him some more time where he can eat and empty his stomach, even if it is a limited kind of eating."…[Although my mother did not], I personally would have wanted a clearer sense of perspective about the actual prognosis…They needed to focus more on the hopeful and not be as aware of how short the time was that they had left. I was not either the person dying or the spouse of the person dying, and because I was another step removed, that's why I needed more reality, and they couldn't handle as much. I don't think that there's an easy answer to that, but I did feel, and I think my mother agreed in the end, that if we had a better sense of the prognosis around getting the G-tube and the TPN feeding, we would have liked a more fully developed discussion. The experience of it was that he couldn't eat anymore and that took away all the remaining quality of his life. That was just horrible for him to go through, and I don't know if we would have made the same choices. We might have.
Families want to know that their loved one's physician is comfortable talking about death and dying.50 The needs of family members for timely and clear information51 are significant but frequently underappreciated.1,21 Family caregivers want to talk, but the context of these discussions requires special attention. In a systematic review, Parker et al52 found that although initially both patients and caregivers had high levels of information need, over time patients needed less and caregivers needed more information. Although family caregivers have many questions, in 1 study they tended not to ask physicians about what dying "looked like," medical errors, funeral arrangements, family disagreements, the meaning of illness, and the afterlife.53 Barriers to family caregivers asking health care providers about these issues included not knowing what to ask and not wanting to appear ignorant. Communication with families is complex due to the multiplicity of perspectives held by family members, as Ms L's observation makes clear. Physicians should provide proactive guidance, including sharing data on the efficacy of feeding tubes and cardiopulmonary resuscitation in relevant situations, describing the possibility and process of withdrawal of interventions, and explaining the role and benefits of hospice.3,54,55 Recently, using a large population-based sample of the elderly, hospice was associated with a significant reduction in the risk of death of the hospice patient's bereaved spouse, even when hospice was used only for a median of 3 to 4 weeks.56 Prognostic information may be especially important for physicians to supply to family caregivers. Data suggest that family members tend to overestimate patient prognosis.57 However, more than 90% of family caregivers wish to avoid "false hope" and believe that physicians should not avoid discussing difficult prognoses as a means to provide patient hope.58 In fact, families generally understand that timely discussion with physicians of prognoses allows them a crucial opportunity to prepare practically and emotionally for the death of their loved one. Family members also believe that accurate prognoses allow them to provide the optimal care for their loved one. (See also Chapter 2, Beyond Advance Directives, and Chapter 19, Complexities in Prognostication in Advanced Cancer.)
Careful listening is paramount in order for physicians to understand the diverse perceptions family members may have regarding decisions about life-sustaining treatment, dying at home, and talking about the meaning of death.21 Physicians can elicit a family's views with open-ended queries such as "What are your most important hopes?" or "Have you seen or been with someone who had a particularly good death or particularly difficult death?"59 Physicians should strive to provide answers to a family's cognitive questions but offer empathic responses to their primarily affective expressions.60,61 Ultimately, physicians have a role in helping families come to understand what their loved one's medical care signifies—including the particular patient and family's definitions of "doing everything," "giving up," or "letting go."62,63
Informal family communication may occur spontaneously at the bedside, in clinic, in the hallway of hospitals or nursing homes, or by telephone. Formal communication typically occurs in a family meeting or conference.64 With appropriate documentation in the medical record, physicians can bill for this service, particularly if it takes place in the presence of the patient. Time spent can be used to determine the evaluation and management coding level if more than 50% of the encounter is spent counseling and relaying information. Family meetings take on increased importance at the end of life because many patients have lost their decision-making capacity.62,65 Recommendations for conducting productive family meetings are presented in Table 28-1. There are now good data about the efficacy of family meetings. One study of intensive family communication showed a 1-day reduction in median length of stay in the ICU among patients who died.66 Lautrette et al67 showed that a simple communication intervention in the ICU that included a brochure on bereavement and longer conferences and more listening led to improved family depression, anxiety, and posttraumatic stress.
Table 28-1Recommendations for Conducting a Family Meeting When the Patient Is Not Present |Favorite Table|Download (.pdf) Table 28-1 Recommendations for Conducting a Family Meeting When the Patient Is Not Present
|Elements of the Meeting ||Specific Tasks and Helpful Phrases |
|Prepare for the meeting || |
Review medical issues and history
Coordinate health care team
Discuss goals of meeting with team
Identify a meeting leader among the health care team
Discuss which family members will be present
Arrange a private, quiet location with seating for all
Try to minimize distractions: set aside adequate time and seating, turn off pager if possible
|Open the meeting || |
Introduce all in attendance
Review the medical situation
Establish the overall goal of the meeting, eg, "Today I'd like to make sure everyone understands how [the patient] is doing and answer all the questions that you have" or "We wanted to meet today to discuss how [the patient] will be cared for at home."
Be prepared for the goals of the meeting to change based on family's desires
|Elicit family understanding || |
eg, "What have you been told about [the patient's] condition?"
After hearing from the family, a helpful follow-up is "Is there anything that isn't clear that we can help to explain?"
|Elicit patient and family values and goals || |
Elicit goals of all those present, especially if multiple perspectives are held
Begin with an open-ended question, such as "Given what's gone on, what are your hopes for [the patient]?" This may be followed by more specific suggestions for the family: "Sometimes getting home is an important goal for someone. Sometimes seeing a certain family member or friend is an important goal: are there things like this that you imagine are important for [the patient]?"
Understand ethnic and cultural influences on communication styles, family relationships, medical treatments, and end-of-life care, eg, "Can you please help me to understand what I need to know about your beliefs and practices to take the best care of [the patient]?"
Maintain focus on the patient's perspective. Often this can help to relieve guilt that family members may feel over making decisions, eg, "What do you imagine [the patient] would have done/wanted in this situation?" or "Our goal is not so much to think about what you would want or not want but to use your knowledge of [the patient] to understand what he or she would want in this situation."
|Deal with decisions that need to be made || |
Achieve a common understanding of the issues
Find out if the patient had made his or her wishes about the decision known, eg, "Had [the patient] ever discussed what he/she would want or not want in this kind of a situation?"
Reassure family that they are making a decision about what is in the best interests of the patient, not necessarily in their own best interests
Begin with open-ended assessments and then turn to specific interventions if necessary
Offer clear recommendations based on patient and family goals, eg, "Given our understanding of the medical situation and what you've told us about [the patient's] goals, I would recommend not pursuing dialysis."
Seek consensus whenever possible, agreeing on the decision or on the need for more information
Use summary statements, such as "It sounds like we are coming to an understanding that [the patient] would not want to continue on the ventilator. Is that how everyone understands his/her wishes?"
Consider the possibilities of seeing the decision as a "therapeutic trial" or as a health care team recommendation that requires only family assent
Check for understanding of the decisions made, eg, "I want to make sure everyone understands that we've decided to _______."
|Close the meeting || |
Offer a brief summary of what was discussed
Ask for any final questions
Offer a statement of appreciation and respect for the family, eg, "I appreciate how difficult this must be, but respect everyone for trying so hard to do right by [the patient]," or "I want to thank everyone for being here and for helping to make these difficult decisions."
Make a clear follow-up plan, including plans for the next family meeting and how to contact the health care team
|Follow up on the meeting || |
Document the meeting in the medical record
Follow up with any information or reassessment agreed on during the meeting, eg, "When we last met, you were going to talk with your brother about our meeting. How did that go?"
The US Health Insurance Portability and Accountability Act (HIPAA) has generated significant concern among physicians concerning privacy regulations, but the impact of HIPAA on physician-family communication is not yet known. Most commentators urge physicians to try to obtain patients' consent when talking with family members,68 but this consent may often be presumed. The Office of Civil Rights Privacy Rule, as well as interpretation from the Web site of the US Department of Health and Human Services, suggests that unless individuals have indicated that they do not want information shared with family members, HIPAA regulations allow it.69
Advance Care Planning and Clear Decision Making
MRS R: The first decision was to absolutely follow his lead…By Friday the blood test results were bad and the bilirubin was quite high, and things were really falling apart. By that time, I was becoming insecure. I didn't realize that my husband was as well…In the meantime, my daughter found out that there was a palliative care unit in the hospital near us that no one had ever mentioned and we didn't know existed. We also found out that in palliative care you don't have to wait in the emergency department for a room. If there's a room, you go directly to the room, and the care is superb. My husband and I jumped on it. We went right away, almost more to avoid having to worry about not having a doctor who we could talk to than because he was in such bad shape. But it was also because I couldn't cope…I didn't know until we got to the hospital and he said, "Oh, I feel better here." He felt safer there. But we were still fighting to come home. I don't know if he was fighting, by that time he wasn't talking a lot. He had always said he wanted to die in his own bed. But that was not in terms of this illness, and it wasn't then. He felt more comfortable in the hospital.
[Then] he felt better enough so that we could go home. We were planning to go home on a Tuesday. On Tuesday morning, I had set up interviews for a position for a male nurse or a person to come and stay in the house because I knew I couldn't handle it myself. My husband was 6'1". Particularly with the edema, he was extremely heavy, and he couldn't do anything to help us. So, I interviewed a couple of people, but then the nurse practitioner came in and told me that she didn't think he could go home…I felt terrible, because I knew that meant he was too sick to go home…He died very early Friday morning.
Advance care planning has emerged as an important paradigm for discussing end-of-life care. (See also Chapter 1, Initiating End-of-Life Discussions With Seriously Ill Patients.) It includes discussing preferences, values, and contingencies for end-of-life care, as well as preparing legal advance directives, such as naming a health care proxy or executing a living will. Exploring patient wishes regarding after death issues may be useful as well, including plans for autopsy, organ donation, funerals, and disposition of possessions. Although clear proof of the beneficial impact of advance directives themselves on costs, decision making, and clinical interventions has been elusive,70-72 there is growing consensus that engaging in the process is important for patients, families, and clinicians73,74 and more recent evidence demonstrating discussions associated with less aggressive care near the end of life, which is associated with improved patient quality of life and caregiver bereavement.75 Advance care planning is not a static document or a set of instructions but rather an ongoing process and an opportunity to engage with families and patients. Even when advance care planning has begun early in a patient's illness, as it should, patient and family preferences may change and it is critical for physicians to follow up and modify plans as the illness progresses.74
Patients develop treatment preferences, consider truth-telling, and undertake decision making within a cultural and ethnic heritage. In a study of 200 elderly people from 4 ethnic groups, 57% of Korean Americans and 45% of Mexican Americans believed that the family should be the primary decision maker, compared with 24% of American Americans, and 20% of European Americans.76 But even with the goal of honoring cultural background, patients and families must not be stereotyped because there is wide variation of beliefs within cultures and personal characteristics may be as important as cultural influences. For physicians, cultural sensitivity is likely to be as important as cultural competence.77 (See also Chapter 32, Negotiating Cross-cultural Issues at the End of Life, and Chapter 33, Palliative Care for Latino Patients and Their Families.)
For patients lacking decision-making capacity who have not previously identified a surrogate decision maker, it is generally appropriate to turn to the family.78 Notably though, predicting patient preferences is difficult for both family and clinicians. In one study, given only demographic and clinical information, clinicians were only slightly better than chance in predicting a patient's preferred code status.79 In another study of actual patient-surrogate pairs using hypothetical scenarios, surrogates' predictions were accurate only 66% of the time.80 Surrogate-patient agreement is often limited, even in cases when patients and surrogates have discussed preferences before.81,82
Even in the presence of an advance directive, family members may have conflicts of interest or disagree with each other. Guidelines for achieving consensus among disagreeing family members include focusing on the known medical facts of the patient's conditions and continually refocusing on what is known about the patient's values and preferences.78 Physicians can focus on the precept of substituted judgment and encourage each family member (both appointed surrogates and others) to imagine and discuss what the patient would want done for him or herself, which is not always equivalent to what the family member would want done for the patient.62(See also Chapter 4, Dealing With Conflict in Caring for the Seriously Ill.)
Distant family and the unpredictability of physician and family schedules can combine to make decision making even more difficult. In such cases, telephone communication and conference calls may be pursued. As with in-person meetings, having a clear goal for the call and a discussion leader are key. Although e-mail and Web-based systems are useful ways for families to circulate updates, the inability to foster real-time, synchronous interaction generally limits their utility for family decision making.
MRS R: Giving care at home made me feel useful. I loved my husband. I adored him. But, I didn't know when there might be another way. And it wasn't so much in the caregiving at home as it was in the treatment. If anyone had told me that giving him all these fluids might make him blow up so he couldn't move, we might have thought about it. When you're that close to the end, which we sort of got an inkling…it would have been helpful to me as the caregiver at home, and to my husband perhaps, if we had known a little bit better, and maybe a little bit sooner, what all the options were in terms of treatment.
My husband was a brilliant man and, while not brilliant, I'm no slouch myself. We process pretty well. [Home caregivers don't] know what they don't know. But I didn't know questions to ask doctors, and professional caregivers don't know when you're ready to hear. That is the crux of the whole problem, to me…I never talked to the doctor without my husband there. So, it was not always easy to ask a blunt question because he was forever hopeful. I don't think I was anything else, either. I had some nagging fears.
But, it wasn't until a few days before we went into palliative care that I asked how long he might have. So, for the first time we heard that if he didn't have another chemo treatment, it might be as short at 2 weeks. That was the first I'd heard that. I could have asked that question earlier, but I didn't have the guts, or I wasn't thinking we were that close…I don't know.
MS L: It was never presented to us what it would entail, in terms of taking care of him…We were getting home health care from the oncology service whenever he needed it. At that point, the nurse was coming every day to help. I think that we always knew that we could buy or arrange for some sort of coverage for additional help. Mom did not want it. She got a great deal from taking care of him. And I think it really meant a lot to both of them.
Although family caregivers are important to the care of patients in the hospital62 and nursing home,83 the family caregiver role is central to home-based patient care. At home, the success of the care plan may depend on the physicians' relationship with the patient's caregiving network. Family caregivers are medical team representatives in the home, providing medical services and assessments, including complex decisions about when to call the physician or bring the patient to the emergency department, with little preparation, training, or compensation.7 A 1998 US national survey of 1002 informal caregivers found that one-fifth of all caregivers help with dressing changes and nearly 40% administer medications.6 Among caregivers administering medications, half are responsible for managing 5 or more, and 1 in 6 must administer medications nonorally, including via injection. Mr R was taking 10 medications, all of them managed by Mrs R. A number of medications, such as lorazepam for anxiety and haloperidol for insomnia, were given as needed, creating an additional responsibility for Mrs R to make dosage and administration decisions. This became an overwhelming responsibility for her as Mr R's health declined.
Physicians' medication orders should provide specific guidelines for use and administration of medications at home, especially for medications given by family caregivers on an as-needed basis.84 Evidence suggests that medications for breakthrough pain are underused in homecare85 and physicians, along with other members of the homecare team, can help clarify the use of such treatments. In addition, family caregivers require clear instructions about when and whom to call for help. Family caregivers require 24-hour-a-day access to professional advice and e-mail, online, handheld, and wireless communication technologies can supplement routine telephone access. Even for families committed to caring for their loved one at home, caregivers require direction about which developments (such as sudden, massive, uncontrolled bleeding) might best be addressed by calling 911 directly and seeking care emergently in the emergency department or inpatient palliative care unit.
Physicians are part of the interdisciplinary home care team providing family caregivers with orientation, information, training, and support. Especially for patients not enrolled in hospice, physicians play a role in initiating and orchestrating, along with home health social workers and agencies, the multidisciplinary referrals and training family caregivers may require. Beyond their role as organizers and supervisors, physicians can make home visits and be reimbursed for this service.86 Physician home visits have been shown to improve patient quality of life and delay nursing home admissions.87,88 In addition, the multiple roles physicians play in supporting home care create important opportunities for medical student and house staff education about palliative care and working within a clinical team.89,90
Physicians can help prepare family caregivers by orienting them to the expected natural history of the patient's condition, the care needs that might arise, and the options for the caregiver's response. Physicians should also educate families regarding their options when dying at home is not desired and describe the range of services provided by an institutional hospice or hospital-based palliative care unit. Unfortunately, when Mr R's condition deteriorated to the point that he could no longer be cared for safely at home, the referral to the palliative care unit came from a concerned family friend, not from Mr R's physician, and the family initiated it on their own. (See also Chapter 36, The Role of Hospice and Other Services, and Chapter 37, Secondary and Tertiary Palliative Care in Hospitals.)
Empathy for Family Emotions and Relationships
MS L: [The burdens] just brought us closer. I felt very privileged to be able to be helpful to him and to be helpful to my mother. And it occasioned a lot of the most precious moments of connection that I'll always remember.
MRS R: Giving care at home made me feel useful…It only became scary for me at night when there were just 2 of us here, and I realized that if anything untoward occurred, I wouldn't be able to do anything for him.
MS P: The patient's needs can be taken care of. There's more anguish for the family. I think it's harder on the family than it is on the patient.
They were wonderful. The 2 of them, Mr and Mrs M, they were like a love story. It was heartbreaking. They would tell stories about their relationship. The thing about home care is that you really get in these people's lives because you're in their house. The thing that I always try to do with people is to give them control. I look at it like I'm a guest in their house. They have so little control over anything. They can't control the disease. When they go into the hospital they can't control what time people come into their room. Somebody like him that was a big businessman, they're used to controlling things. I always tell them, "You're in charge." And I always tell people that they have the right to refuse. You don't have to do any of this stuff. When people are so sick from chemotherapy, I tell them they can take a break. We'll talk to the doctor and see if it will matter, but sometimes you need to take a break. You try to put as much normalcy back into people's lives as you can. Because one minute they're fine, and the next minute, they're not.
More than two-thirds of caregivers of family at the end of life report the work to be rewarding.12 Still, family caregiving can both strengthen and strain personal well-being and family relationships. As in this case, adult children frequently assume responsibilities for ill parents and may have to adjust the expectations within their own nuclear families. Amidst the challenge of integrating illness into family dynamics, family members may find themselves reacquainted with long-estranged relatives during the period of end-of-life care and bereavement.
Addressing family caregiver emotions and recognizing family dynamics may be a necessary prerequisite to optimum care of the patient. The personal characteristics and emotional strain of family caregivers may create barriers to placement of patients in appropriate care settings, leading family inappropriately to insist on or reject care in the ICU, long-term care settings, home, or institutional hospice. Caregiver attitudes and burden directly affect the rate of patient hospitalization and institutionalization.91,92 In a study of 40 caregivers of patients with mild to moderate dementia, caregiver depression negatively affected their assessment of the patient's quality of life,93 which may bear on the caregiver's ability to serve as an appropriate surrogate decision maker.
Although family caregiving holds the promise of promoting patient autonomy and dignity, conditions such as diarrhea, hair loss, open wounds, and incontinence can sometimes lead to loss of privacy, embarrassment, or resentment for the patient. Preparing the family and patient for these contingencies, emotional troughs, and the inevitability of loss is critical.3,46,50,94 Physicians can be helpful in recognizing and validating common feelings and reassuring family members about the quality of their care.3,46,59 Empathic responses, such as "This must be a very difficult time for you," communicate respect and support during an emotionally stressful, even traumatic, time. In a study of 988 terminally ill patients and 893 caregivers, caregivers of patients whose physician listened to the caregivers' needs and opinions had significantly less depression (27.6%) than caregivers of similar patients with nonempathic physicians (42.0%).95 Adult day care, respite care, home care, social work services, and caregiver education and psychological support demonstrably improve caregiver satisfaction, quality of life, and burden.40,92,96-102 Legacy activities have been shown to improve family communication and lessen caregiver burden.103 Helping family caregivers identify support resources may be especially important for families of patients ineligible for the comprehensive services provided by hospice.94 Unfortunately, 1 survey demonstrated that less than 5% of family caregivers used respite and support services.12
Attention to Grief and Bereavement
Grief worsens both physical and mental health and has been associated with increased depression, insomnia, substance abuse, suicidality, and mortality.104 Research suggests that the caregiving experiences of family members influence their adjustment to the patient's eventual death.105 Preparation for the death of a loved one is key for family caregivers to help avoid mental health morbidities.106 Caregiving support may be even more important than grief support: a study of 73 adult family caregivers showed that caregiving support before the patient's death accounted for 29% of the variance in personal bereavement difficulties, whereas bereavement support after the death accounted for only 2%.107
Bereaved family members highly value a physician condolence telephone call, letter, or visit, as well as attendance at the patient's funeral.108,109 Such contact communicates caring, models healthy coping with the loss, and allows physicians to answer family questions and assess for complicated grief. This communication may improve bereavement outcomes.109 Along with members of an interdisciplinary team, physicians can normalize the family member's feelings of grief and recommend basic but effective behavioral interventions, such as daily activity, journal writing, time with empathic friends, grief counseling, and support groups.110-113 Around meaningful days, such as the deceased's birthday, yearly anniversary of death, and wedding anniversary, loved ones often experience a recrudescence of intense grief and physicians may help by alerting the bereaved to this possibility. During the first year of grief and anytime thereafter, the diagnosis and treatment of major depression is vital.114 (See also Chapter 25, Caring for Bereaved Patients.)