Feature Article: Advance Care Planning Made Specific for the Individual with SCI/D
Phillip M. Kleespies, PhD; and Stacey C. Conroy, MSW
The goal of this article is to describe a process-oriented approach to advance care planning and the development of an advance care planning workbook based on that approach for individuals with spinal cord injury or dysfunction (SCI/D). Some of the difficulties that have arisen with advance care planning in general are discussed, providing a background for employing a process-oriented approach and for the development of the workbook. Next, the rationale for making an SCI-specific workbook and the process of developing it are presented. Finally, the workbook itself is described, and the results of a quality improvement/satisfaction survey are reported.
As Ditto (2005) has pointed out, advance care planning and the advance medical directive have been rapidly assimilated into health care practice as the solution to a problem. The problem can be stated in the following way. Throughout it’s long history, the profession of medicine has been dedicated to the goal of keeping people alive for as long as possible and by the use of all available means. Biomedical science and technology, however, have now reached the point where lives can be maintained that are of very low quality. Thus, hearts can be kept beating and lungs can be kept pumping even though there is little or no cognitive functioning or even though there is great pain and suffering.
Many people have stated that they would prefer not to have their lives maintained under such conditions. Their concern, however, is that they would have no choice once they are debilitated and lose their decision-making capacity. Advance care planning and the advance directive (AD) were introduced as a way of resolving this dilemma. Advance care planning (through the AD) allows individuals, while still capable of making their own healthcare decisions, to express a choice about accepting or refusing acute, cure-oriented treatment should they become terminally ill, mentally incapacitated, and have little or no hope of recovery. After several watershed Supreme Court cases, for example, In re Quinlan and Cruzan v Director, Missouri Department of Health, Congress legitimized advance care planning and the use of ADs by passage of the Patient Self-Determination Act of 1990. The Act was hailed as an important affirmation of a patient’s right to autonomous decision-making.
As Ditto (2005) has said, however, there have been problems with the solution. First, disappointingly few Americans complete ADs (see, e.g., Teno, et al., 1997). Second, substantial change and instability can occur in people’s treatment preferences over time (Danis, Garrett, Harris, & Patrick, 1994). Third, surrogate decision-makers and health care proxies have considerable difficulty in interpreting and predicting patients’ wishes for life-sustaining treatment even when they have seen and discussed the patient’s AD with them (Ditto, et al., 2001). The most troubling information about advance directives, however, came from a large empirical investigation called the SUPPORT study (SUPPORT Principal Investigators, 1995).
The SUPPORT study was a $28 million, multisite trial of an intervention to improve advance care planning. In an observation phase of the study, the investigators determined that one of the major problems in advance care planning had to do with poor communication between patients and caregivers during end-of-life care. For the intervention part of the study, they devised a method to try to improve communication. A skilled nurse facilitator was assigned to each patient in the intervention group. The nurse’s role was to carry out end-of-life discussions, provide relevant healthcare information, and convene meetings between care providers, patients, and their families. A control group received conventional care.
Some of the findings of the SUPPORT study were that the percentage of patients completing ADs was unchanged, remaining at about 21% across groups. Documentation of ADs in the medical record improved dramatically from 35% to 78%, but only 12% of patients with ADs had talked to a physician prior to completing them. Moreover, only 25% of physicians knew if their patients had an advance directive. Most ADs consisted of a signed standard form or appointed a health care proxy. Of those who completed a living will, or gave actual written directives, only 5% gave specific, rather than pro forma, instructions. Of those who had expressed a wished to forego acute treatment, the actual treatment at the end of their life was in conflict with their advance directive in slightly more than 50 % of the cases. The investigators concluded that current practice with ADs yielded few actual directives, and that there was little evidence to suggest that ADs ensured end-of-life treatment consistent with the author’s wishes. The study seemed to offer an indictment of advance directives.
It was noted, however, that the experience with advance directives in at least one state––Oregon––differed markedly from the SUPPORT findings. In Oregon, which has had a strong emphasis on promoting good end-of-life care, nearly two-thirds of those who died had an advance directive. In addition, more than 90% of the families of patients with ADs reported being satisfied with how their relative’s end-of-life experience had been managed (Wyden, 2000). Critics of the SUPPORT study also pointed out that the study, in certain respects, failed to promote good communication between patients and providers. Thus, for example, seriously ill patients in the study were asked whether, if their heart stopped beating, they would want their doctors to try to resuscitate them or not. Such a question does not allow for the alternative of comfort or palliative care. The patient is left with the notion that there are only two options: resuscitation or nothing.
Subsequent to the SUPPORT study, two smaller investigations placed emphasis on good clinician-patient communication and a process-oriented approach to advance care planning. These studies found results that were notably different from those found in the SUPPORT investigation. In the first of these––the Lacrosse Advance Directive Study (LADS) in Wisconsin––four major healthcare agencies collaborated with the study (Hammes and Rooney, 1998). They launched an educational effort throughout Lacrosse county, and AD educators were placed in all health care organizations in the county. They emphasized that advance care planning is an ongoing process, and they shifted the focus from that of completing an AD form to a discussion of values and preferences. They refocused the discussion of preferences away from autonomy and toward relationships and involvement of family and loved ones in the process. They asked patients how they might guide family members to make the best decisions for them.
Prior to the LADS study, only 15% of the population in that county had an AD. Two years after the program started, there had been 540 decedents and 85% of them had an AD. Most of the decedents had made their end-of-life wishes known a year before death. Nearly all of them had wanted to limit life-sustaining treatment in some way, and 98% had had some limitation of acute treatment. The most common rationale for requesting a limitation of treatment was a permanent and negative change in quality of life, and the most common preference was not to attempt cardiopulmonary resuscitation (CPR). Decisions made at or near the time of death were found to be very consistent with the preferences stated in the ADs.
As noted above, the LADS study does not stand alone. Molloy, et al., (2000) conducted a prospective, randomized, and controlled study of advance care planning in matched nursing homes in Canada. These investigators also utilized a systematic and extensive educational program about advance care planning: the Let Me Decide program. They trained nurses as facilitators and the nurse facilitators educated nursing home staff, hospital staff, nursing home residents, and their families. They developed an AD that was far more comprehensive than the standard AD in describing life-threatening illnesses, cardiac arrest, CPR, feeding and hydration options, and so forth. The treatment differences between nursing homes where this program was instituted and those where it was not were that the nursing homes with the program had significantly fewer hospitalizations for residents, significantly reduced resource use, and significantly reduced use of acute care.
The results of the LADS study and the Molloy study stand in marked contrast to the SUPPORT study. They suggest that if there is a strong educational effort about advance care planning, if there is a focus on meaningful discussion, and if advance care planning is approached as an ongoing process rather than the completion of a form, then people are more likely to see it as important and relevant to how they wish to die.
Why Make Advance Care Planning Specific to the Individual with SCI/D?
Spinal cord injury is typically not a terminal illness. It is a chronic condition, but a chronic condition that leaves those afflicted with a life expectancy that is, on average, less than normal. The projected mean life expectancy of individuals with SCI compared to the general population has been found to be approximately 70% of normal for those with complete quadriplegia and 86% of normal for those with complete paraplegia (Soden, et al., 2000). The reduced life expectancy of the SCI/D population is attributed to their greater susceptibility to life-threatening conditions such as pneumonia, septicemia, and pulmonary emboli. When engaging in advance care planning, autonomous decision-making is enhanced for those with SCI/D if they are informed about those conditions that can, and often do, foreshorten their lives. In fact, it seems clear that those with SCI/D have a right to expect information that could have such an important bearing on life expectancy. Given the emphasis in American bioethics and law on self-determination as a key value (Kleespies, 2004), the SCI/D patient also clearly has a right to have a say in how these conditions are managed, particularly near the end of life.
SCI/D advocates, and more generally, disability rights advocates, have expressed concern about end-of-life decision-making with the disabled (Werth, 2005). Their concern is that societal devaluation of people with disabilities and negative attitudes of health care providers toward the quality of life of this population could influence decisions to withhold or withdraw life-sustaining treatment near the end of life. This concern is clearly a legitimate one and those who work with the disabled, as well as the disabled themselves, need to be vigilant about holding the line to prevent such possibilities. Advance care planning, however, offers those with SCI/D (or with any disability) the opportunity to express their wishes and values with regard to prolonging life and the ways in which their care is to be managed when they are no longer able to decide for themselves. An advance care planning document specific to the person with an SCI/D should assist in realizing this opportunity.
The Development of the Advance Care Planning Booklet for Individuals with SCI/D
The VA Boston Advance Care Planning booklet for individuals with SCI/D is not the first advance care planning document for those with a specific illness or condition, nor is it the first for patients with SCI/D. Berry and Singer (1998) have proposed a cancer-specific advance directive, and Blackmer and Ross (2002) have likewise developed a spinal cord injury advance directive (SCIAD). In both of these endeavors, the authors sought input from both medical staff and patients in designing an AD that would present patients with illness scenarios and potential treatments that they would be likely to confront given their particular illness or condition. For SCI patients, Blackmer and Ross developed a grid that listed the most common life-threatening medical problems that occur following an SCI along one axis and potential treatments along the other axis. In each box in the grid, the patient is instructed to write Yes if that treatment would be desired in the specified situation, No if not, Undecided if uncertain, and Trial if a trial of the treatment for a delimited period of time would be preferred to see if it might be of benefit.
As interesting and valuable as Blackmer and Ross’s advance directive is, it appears to have at least two disadvantages. First, the preparation of a grid for such potentially meaningful decisions seems to encourage a “checklist” mentality rather than a thoughtful processing of one’s options. Second, the SCIAD is not easily adapted to a setting (such as the Veterans Healthcare System) in which there is an approved generic advance directive form that is part of the electronic medical record and is used uniformly throughout all services. As an alternative to Blackmer and Ross’s SCIAD , the current authors proposed and developed an advance care planning booklet––a small workbook––to be used by individuals with SCI/D when they wish to think about completing an advance directive. The workbook, which is not itself an AD, includes: (1) a general introduction to advance care planning; (2) the rationale for making a document that addresses the needs of the individual with SCI more specifically; (3) a description of the most common life-threatening medical conditions for those with SCI/D; and (4) a Values Discussion Guide (Karel, Powell, and Cantor, 2004) that can be used by those who wish to think through their values and beliefs relative to death and dying. It is intended for use in conjunction with any standard advance directive form as a way of more fully informing the choices that are made.
The workbook asks people to picture themselves in the position of having an incurable condition that will cause death, or to imagine themselves in the position of being in a state of permanent unconsciousness. Next, they are instructed to read, one by one, a brief description of each of the most common life-threatening conditions and their typical treatments that can occur for those with SCI/D. Following the description of each life-threatening condition, they are presented with a series of choices. For example, the following description and choices are given with the condition of septicemia:
Septicemia is a widespread infection in the blood and internal organs. It can occur when a pressure ulcer becomes infected or when there are other sites of infection in the body. If it originates in the bladder or kidneys, it is called urosepsis. It is usually treated with antibiotics and intravenous fluids. In severe cases, however, it may cause certain organs to shut down and treatments such as intubation and mechanical ventilation might be needed to sustain life.
The life-threatening conditions described in the workbook have been adapted from those listed by Blackmer and Ross (2002) and include pneumonia, septicemia, pulmonary embolism, abdominal obstruction, stroke, cardiac arrest, and respiratory arrest. Since under the emergency circumstances of cardiac arrest or respiratory arrest it is not possible to consider limiting treatments or having a trial of treatment, choices are limited to but two possibilities: to have the treatment or not.
The advance care planning workbook was reviewed in draft form by several VA Boston SCI staff members representing medicine, psychology, and social work. It was also reviewed by the Executive Board of the New England Chapter of the Paralyzed Veterans of America. It was then offered to those VA Boston SCI patients who expressed an interest in completing an AD. Next, one of the authors (S.C.) conducted a quality improvement telephone survey to collect information from SCI patients on the perceived value of the workbook when considering the completion of an AD.
The Quality Improvement Telephone Survey on the Value of the ACP Workbook
Over a period of five months, forty-two workbooks entitled Advance Care Planning Specific to Individuals with SCI/D were provided to SCI patients receiving medical service at the VA Medical Center in West Roxbury MA. Of these forty-two workbooks, eight were provided to individuals on the inpatient SCI floor, while the remaining thirty-four were provided to individuals receiving outpatient SCI services. SCI patients who received the workbook were given the opportunity to review it with a VA social worker, social work intern, family, friends, medical providers, or any combination of those listed. After reviewing the workbook, participants were contacted and asked to complete the following survey on the value of the workbook in considering and completing an AD.
Twenty surveys were completed. Four were face-to-face interviews with SCI patients receiving inpatient medical services, while the remaining sixteen interviews were conducted by telephone. All of the participants were male veterans. Their mean age was 55.1 years (SD = 13.1, age range = 33-78 years). Fifty percent were married, 30% divorced, 10% single, 5% separated, and 5% widowed. Ninety percent were European American, 5% African American, and 5% Hispanic American. Sixty-five percent were paraplegic, 25% quadriplegic, and 10 percent had multiple sclerosis with spinal cord involvement. Overall the responses to the survey were very positive (Table 1).
The remaining twenty-two participants were lost to follow up. Of those lost to follow up, the authors were unable to contact ten participants, three provided invalid phone numbers, four reported no recall or loss of the workbook, one was unable to read due to recent vision loss, one moved out of state, one became seriously ill and could no longer participate, and one reported that he or she was no longer interested in participating.
Some of the respondents also gave narrative answers to the survey questions. Their responses can be classified into three categories as follows:
1) Use of the workbook to discuss end of life issues with family members.
2) Use of the workbook for information about life-threatening conditions
3) Use of the workbook for information about options and choices
Thus, many of the SCI patients who completed the survey seemed to have found the workbook informative and meaningful in thinking about end-of-life issues and choices. They also seemed to have increased their knowledge of the right to accept or refuse medical or surgical treatment, along with the right to prepare an advance directive. The workbook incorporates the institution’s responsibility under the Patient Self-Determination Act to provide ongoing community education on advance directives (The Patient Self-Determination Act, 1990).
Discussion
The VA Boston Advance Care Planning workbook for individuals with SCI/D was designed to provide information specific to spinal cord injury patients as they think about and approach the end of life. The patients and staff who read this workbook did not seem to feel that a discussion of the issues was devaluing people with disabilities; we hope this was because we took care to avoid the possibility. The results of the quality improvement/satisfaction survey suggest that, at least for patients who read the workbook, it was viewed as informative and meaningful.
It must be acknowledged that more than 50% of those sampled were, in one way or another, lost to follow up. We do not know what their response to the workbook may have been. Moreover, the survey reported in this article was a quality improvement/ satisfaction survey which would not meet the more rigorous standards of a psychosocial research protocol. Perhaps the workbook will stimulate more rigorous research in the future.
Evidence cited earlier (e.g., Hammes and Rooney, 1998; Molloy, et al, 2000) has indicated that education about advance care planning and a focus on advance care planning as a process rather than a pro forma decision, can increase the relevance of advance care planning and advance directives. This brief advance care planning workbook is intended to educate individuals with SCI/D about life-threatening conditions that they are more likely to face and to encourage a more thoughtful and informed decision-making process about end-of-life issues. It is, however, only a tool, and the real effort to improve advance care planning must come through the important discussions that patients have with their treatment providers, family, and friends. Advance care planning workbooks such as this one can, we hope, encourage such discussions.
On a final note, the advance care planning workbook is available only in print. One SCI patient was not able to access the information due to recent vision loss. Having advance care planning materials in alternative format, large print, and audio, would be beneficial in increasing access to information on advance care planning and advance directives. A copy of the VA Boston Advance Care Planning booklet for individuals with SCI/D can be obtained by writing to first author Phillip M. Kleespies, PhD, VA Boston Healthcare System (128), 1400 VFW Parkway, West Roxbury, MA 02132.
References
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Phillip M. Kleespies, PhD, is an assistant clinical professor of Psychiatry at Boston University School of Medicine and a psychologist at the VA Boston Healthcare System.
Stacey C. Conroy, MSW, is a clinical social worker, Victory Programs, Boston, MA.