Go Back
Go Back |
Palliative Care: Psychosocial Dimensions |
Assessing and Treating Psychosocial Suffering In The Terminally Ill Patient & Family
Behavioral Objectives:
By the end of the class, students should be able to:
Describe the physician's role in end-of-life care.
Perform a psychosocial assessment applying principles of compassionate care.
Analyze one's own emotional and cognitive reactions during an interview with a terminally ill patient.
Describe several supportive measures to use with patients and families during the end-of-life period.
Discuss how a physician can provide emotional support and psychological comfort to a terminally ill patient or a member of the patient's family system.
Describe how a terminal illness can affect the family group.
Identify the common emotional and practical needs of hospice patients in finishing their life business
General Principles
The physician’s responsibility for the psychological and social well being of terminally ill patients may seem less well defined than that for physical care. The scientific basis for most psychological intervention is relatively recent, and by nature is more qualitative than quantitative. Supportive care of patients and families cannot be reduced to protocols or algorithms. Nonetheless, enough is known about what patients and families need, and why health care providers sometimes fail to meet those needs, to establish a solid basis for practice.
This module presents a basic approach to support of terminally patients and family members. The emphasis here will be on the issues of death and grief unique to this population. However, patients at end of life have many of the same strengths, weaknesses, and needs as other individuals. Premorbid personal problems or social dysfunctions do not usually resolve during a chronic illness. Therefore, psychosocial assessment and care of patients and families is not entirely unique in the palliative setting. The student’s growing knowledge and experience with the general physician / patient relationship is applicable to the specific issues of palliative care.
The Physician Role at End of Life
Physicians have varying degrees of interest in and capability to provide supportive care. Some students know that they are not naturally perceived as warm or caring. It is therefore useful to define the minimum responsibility:
The professional duty to do no harm requires the physician to be aware of what patients and families need, and to assess whether one’s own personal reactions to the situation are helpful or detrimental in meeting those needs.
The most common cause of inadvertent emotional harm to patients and families is health care provider behavior unconsciously caused by defensive reactions. A physician’s personal reaction to a patient death may seem to be a private, rather than professional issue. However, to avoid unintended harm to survivors, the professional role requires awareness of personal coping reactions and assessment of the appropriateness of one’s behavior.
For example, to compassionately discuss DNR status with a patient requires the physician to understand something about what that particular person is experiencing, and then to communicate effectively with him or her. Attentive insight and thoughtful communication may be difficult for a physician who is reacting to the situation of illness and death. Reactions such as withdrawal, irritability, or inattention, while normal, reduce the capacity for communication and empathy. Most readers will be able to call to mind incidents in their own family or personal experience in which health care professionals missed opportunities to be supportive, or in fact made things worse. Common examples include:
terse discussion of bad news, followed by abandoning the patient
minimizing statements such as “You’re lucky . . [something supposedly worse] . . didn’t happen”
giving false hope
failing to assess and refer patients for supportive care
The physician role is to assure that patients and families receive support -- but this does not impose an obligation to personally provide that support in every situation. It does require that needs be assessed and the physician’s important role to the patient and family be acknowledged. As brief as a contact may be, physicians are unavoidably participants in some of the most momentous periods in a family’s life, and they become a permanent part of the survivor’s history and memory. The behavior of the physician can have very helpful or very detrimental effects. This is not a philosophical point; unprofessional practices occur with a frequency that would not be tolerated in the provision of physical care.
Additionally, the cumulative effect of patient deaths on healthcare providers can be profound. Thus, it is important for the well being of patients, families and providers that interactions during end of life be handled in a healthy and professional manner.
The approach to psychosocial support described here identifies both physician and survivor needs, and assists the physician in consciously making choices to address both. Controversial or poorly understood aspects of long-term grief are avoided by focusing on practical methods of assessing need and offering immediate crisis support.
It is important to note that long term grief support and therapy for complicated or pathological grief are specialized skills not discussed here. The following describe methods for physicians to offer psychosocial support while performing a clinical medical role.
What Patients and Families Need
While terminal illness is often consuming and devastating for both patients and their families, actual pathological grief or other psychiatric reactions are not common. What most people need from their physician is uncomplicated. (Not to say that it isn’t difficult at times, but it is not commonly very complex). These needs can be broadly divided into two categories, emotional and cognitive support:
Emotional Support
Acknowledgment Recognize their emotional, cognitive, or spiritual suffering. As obvious as it might seem, it is helpful to verbalize your sympathy.
Presence Do not abandon them. (But allow solitude if desired).
Reassurance Provide a feeling of safety in the midst of turmoil -- someone still in control so they don’t have to be.
Empathy Give the impression that you are someone who cares about them and their pain or loss and is willing to communicate with them. Empathy does not mean losing professional boundaries. They don’t need you to feel as bad as they do. Families just need enough empathy to demonstrate that you seem to understand what is happening to them, that the illness or death is not just a routine part of your day.
Respect Grant permission and provide assistance for them to experience events in the way that they uniquely need, e.g., to know all about what is likely to happen next, (or, choose not to think about it), to hold the body after a death (or not), to observe cultural rituals or practices.
Help with Cognitive Tasks
Planning Help them think through what needs to be done, what is important and what can wait. What other responsibilities need attention, e.g., other relationships in the family, or personal needs of primary caregivers.
Guidance Explain things they have no prior experience with, e.g., medical procedures, or their own reactions to crisis. Look for opportunities to discuss, rather than avoid, questions about local medical-legal requirements such as death scene investigation or autopsy, and decisions about organ donation, or how to make funeral arrangements. There are printed materials available about many aspects of chronic and terminal illness, grief, and coping with loss. Families appreciate this information, even if not read and studied immediately. Referral to support groups or specialized counselors will also provide information and guidance beyond what you can directly provide.
Information Answer questions, if they wish, about what has happened -- the treatment, what the patient is experiencing, or what happened at a death. They may be confused or lack retention initially, but the experience of information being freely available is important.
What Physicians Need
Although less predictable and usually less intense than the reactions of the patient or family, physicians often experience similar reactions. Professionals may have very legitimate personal needs after interacting with a terminally ill or dying patient:
Emotionally, physicians may need to express a variety of moods; besides sadness, there may be anger, anxiety, irritability, exhaustion, and numbness. They may wish to talk about the experience with a colleague. Some call home just to hear a familiar voice and check on everyone. Many providers wish to be alone, others to get busy with something else and not think about it.
Cognitively, physicians may experience difficulty focusing on detailed tasks, or may be forgetful. They may need to briefly change their duties in some way to prevent errors. There may be a need to replay the scenario and evaluate what occurred.
No reaction. Sometimes the physician may be aware of no particular reaction or personal need, and wonder if that is OK.
Meeting the Needs of Patients and Families as well as those of the Physician
In many cases, there is no incongruity, and the physician is free to use his or her communication skills to support the patient and family. At other times, the coping responses of the physician, while valid, may be in opposition to the needs of patients and families. In some cases, assessing need and referring to others is a useful strategy. Other colleagues or support personnel such as social workers or clergy may be available. Hospice programs have a broad range of resources, including trained volunteers.
Awareness of one’s reactions and defenses is required of the professional, but denial of personal need is not. For example:
A physician who feels that “I don’t handle these situations well” and avoids contact may be perceived as aloof and uncaring. This person may be wise to continue limiting contact to what is comfortable, but could probably learn to offer a brief condolence. It might also be useful in this case to examine whether the response is actually normal but the expectation of oneself is unrealistic.
On the other hand, a provider whose attitude is that “I’m used to this and can handle it fine”, may be inadvertently sending the message that this illness or death was routine. Patient and families, of course, never see their situation as routine. A grieving person’s sense of deep loss is present whether we feel it ourselves or not, and should be addressed. It is possible in this situation to make a decision to reflect the experience of the grieving person without feeling it personally.
A professional who minimizes the impact on themselves by focusing on hope for the future or finding some silver lining in the situation will usually be resented if these are voiced. Definitely premature at the time of crisis, such interpretations should only be made by the family. The provider may take personal comfort from such thoughts but must be careful not to verbalize them.
Role Perceptions
The physician’s expectation of one’s self affects personal reactions: if you believe your role is to “cure” or “save”, then all deaths are a failure. Feeling a sense of failure is more likely to cause defensive interactions than it is to cause support of surviving family members. Changing your expectation might include setting realistic goals for your own performance (which you can control), rather than the patient outcome (which you cannot control). For example, goals might include:
“To give this patient every chance to respond to treatment”. – curative or palliative
“To use my best effort and skills”, -- which can be true regardless of the outcome.
“No matter what happens, it will be better for all of us to know we did everything possible”. -- ”Possible” means within the limits of available resources, not a perfect standard.
Similarly, it is common to have unrealistic expectations about how to support survivors. Health care providers are often in the role of “fixing” a problem. However, the survivor’s grief clearly cannot be made to go away. The bereaved person may be too self-absorbed to even let you know you were helpful. This can be frustrating -- you cannot “fix” the patient and you cannot “fix” the grief. It is, however, possible to help them even while they remain in their grief. Looking at the above list of what survivors need, it is useful to set a modest goal to address one or more of them.
“I can’t cure their grief, but I can make sure they don’t feel alone”.
“This family needs someone to let them vent their feelings”.
“I don’t think I can stand to say very much right now, but I can find them resources”.
“We’ll find out what is important to them (Religious rite? Arranging for extended family to come in?), and make sure they get that”.
Composure
Maintaining composure is important personally and professionally for most physicians. Yet, there is little guidance and a wide range of opinion about the appropriate expression of feeling. It is, however, possible to give a practical answer to this question in two ways:
First, from the reports of bereaved survivors -- There are frequent complaints about providers seeming not to care; there are almost no complaints about a provider who showed too much emotion. This means it is safe to err on the side of expressiveness.
Second, from a functional standpoint -- The limit is anything reasonably genuine for one’s personality up to the point of a role reversal (i.e., they must stop to take care of us). While it is never a goal for this reversal to happen, in fact, it does occur at times, and is not usually seen as a problem by the survivor unless it is extreme.
The limits of appropriate composure are more likely to come from one’s own personality, or concern about how one will be viewed by colleagues. No particular level of emotion needs to be demonstrated in order to be helpful, as long as the troubled or grieving person perceives that the physician understands and is trying to help.
Assessment
Assessment Of Psychosocial Suffering
Comprehensive psychosocial assessment is time consuming and not usually the physician’s responsibility. It includes much beyond “social history”, such as cultural issues, family dynamics, and the meaning of the illness. Hospice care always includes an initial social work contact, a primary purpose of which is to obtain such an assessment.
The physician must be able to assess the patient on a broad and integrated level however, making use of the observations of other team members, and from direct patient interaction. The important principle in palliative care is that we are seeking to decrease suffering and increase the quality of life remaining to the patient. Note that accomplishing this objective will be fundamentally different than an objective determination of disease status.
To some extent, the typical history and physical process requires translating a patient’s idiosyncratic experience and perceptions into our own framework of standard terms and concepts.
To plan palliative care for a patient requires almost the reverse -- understanding what matters to this person, what they fear, hope for, and enjoy -- and translating our treatment concepts into a plan that will accomplish this result in the patient’s experience of life.
In fact, both processes should be employed to varying extents with most patient situations, but the balance in palliative care is clearly in the subjective direction. Patient charts in a hospice often do not even contain some of the standard elements we are accustomed to in an acute setting, because they do not advance the goal of care.
For this field experience, the student is urged to understand who the patient is that they intend to present at IDT. We need to know what motivates them and how they experience their illness in order make a meaningful plan of care. Two ways to approach this are the Explanatory Model of Illness, particularly helpful with cultural issues, and the FIFE Assessment of Illness.
Assessment Of Grief Reactions
Anticipatory Grief shares some features with the grief experienced after a death. Most writers agree that only a small amount of the grief work necessary to reconcile a loss can be done “ahead of time”. Rather, the work of grief before a death has to do with finishing tasks, such as forgiveness, and saying goodbye, which can significantly reduce regrets and complications in bereavement. Hospice services include a variety of resources to assist families with their anticipatory grief.
The Patients Own Grief is the subject of Kubler Ross’ well-known work. Although almost all experts decry the popular use of her five well-known “stages” as sequential or necessary phenomenon, she well describes some of the common experiences of terminally ill patients.
The Grief Of Survivors is very much different, however. In the 30 years since publication of Kubler Ross, it has become clear that the experience of going on living after the death of someone close is only similar to the experience of the dying person in certain respects. For instance, “Acceptance” is a reasonable option in contemplating one’s own death, and there is an obvious “Closure” to the process. Few bereaved survivors appreciate either term, however, and the literature has tended towards use of the term “Reconciliation” of a loss, and described clinically useful formulations of the tasks necessary to do so. Two leading models are those of Therese Rando and Alan Wolfelt.
Most grief reactions, though profoundly uncomfortable, are “normal”. Initial denial (perhaps better labeled as “incredulity”), of the death is not unusual, and serves a temporary protective purpose to shield the individual from the full weight of the tragedy. Denial should never be directly attacked. Visual and auditory hallucinations are also occasional reactions that are considered normal but are disturbing to everyone present. Neither of these are psychotic problems in the immediate days after the death. Occasionally a normal grief reaction can be maladaptive or unsafe. The Fight Or Flight response may lead to combative behavior or literal running away from the scene. These behaviors are usually short lived and the individual can be redirected with a calm and direct approach. Crisis reactions can be dangerous. E.g., driving a vehicle while reckless or simply inattentive can be fatal; transportation should be arranged.
Pathological grief reactions or preexisting psychiatric disorders may need specialized attention. The most common concern is suicide. A normal grief experience is that life is not worth living, or wishing to join the deceased in heaven. The person who may need psychiatric evaluation is one who expresses a thought or plan about how to die. The health care provider may also be called on to provide emergency assistance to a survivor who experiences exacerbation of a medical condition such as asthma, seizures, or even a cardiovascular event.
Summary
Compassionate care of the dying and their families is not highly complex, although it can be personally difficult and requires certain personal skills. Cultivating a habit of self awareness is a professional responsibility to avoid confusing personal needs with those of the patient and family. As in all of medicine, thoughtful assessment is required in order to achieve excellent care.