Patient- and Family-Centered Donation
Recommendation 4: Like all care at the end of life, non-heart-beating organ and tissue donation should focus on the patient and the family. As an option for some patients at the end of life, non-heart-beating donation should
follow patient and family wishes as closely as possible
meet family needs for information, support, and follow-up;
recognize and respect patient and family social, economic and ethnic diversity; and
follow clear mechanisms for identifying and covering all organ procurement costs.
PATIENT AND FAMILY WISHES
The patient’s family plays a critical role in the decision to donate. Family members represent the patient’s wishes, make decisions based on both the patient’s and their own values, and give consent for donation to proceed. In some cases, patients have made their wishes known by discussing donation with family and friends or by signing a donor card. In other cases, the patient’s wishes are not known, and the family acts according to what it knows about the patient’s values or according to the values of the family members involved in the decision.
Recent Health Care Financing Administration (HCFA) regulations require that hospitals report all deaths and impending deaths to the local organ procurement organization, and that a trained professional discuss organ and tissue donation options with the patient’s family. These measures are intended to improve the identification of potential donors, and to offer the option of donation in a skilled and sensitive manner. They combine efforts to increase organ and tissue
donation with efforts to “encourage discretion and sensitivity with respect to the circumstances, views, and beliefs of the families of potential donors” (42 U.S.C. Sect. 482.45).
Many families are interested in the option to donate organs and tissues. The current practice of non-heart-beating organ procurement has been influenced by family requests for organ donation to take place after the withdrawal of life-sustaining treatment. Organ procurement organizations that engage in non-heart-beating organ procurement report that their efforts have been stimulated by family requests. This information has been reported in the literature as well (DeVita et al., 1993).
The committee placed a high priority on learning at first hand the feelings, attitudes and experiences of non-heart-beating donor and nondonor families. As far as the committee was able to determine, no studies have yet been published on non-heart-beating donor families. Minimal information is available on families who seek non-heart-beating donation, or families who decide against it. Published studies deal with the general characteristics of donor families (Bartucci, 1987; Batten and Prottas, 1987; Pearson et al., 1995), or donor and nondonor families (DeJong et al., 1998), in the more usual situation of death by neurological criteria.
The committee was unable to locate family members who declined non-heart-beating donation. In general, non-heart-beating donation is offered as an option only after the family has expressed interest in having donation take place. At this time, there is no readily accessible pool of families who have considered and declined this option.
One father whose son became a non-heart-beating donor declined to participate in the workshop. Strongly committed to organ and tissue donation and to the non-heart-beating option, he preferred to devote his efforts to raising public awareness of donation, rather than to the activities of this workshop. A legal review of in situ organ preservation and rapid organ recovery reports on his experiences with his son’s donation (Braun and Drobny, 1998).
Two families who wished to donate a family member’s organs and tissues but were unable to do so because of the lack of a protocol were willing to participate in the workshop. They wished to share their regret at being unable to donate, and to help make this option possible for other families. In one case, parents sought to donate their son’s organs and tissues after he was struck by a car and critically injured. Their interest in donation was particularly acute since this was their only surviving child. A younger son had been killed two years earlier in a skiing accident.
Paramedics responded to the scene where our son needed cardiopulmonary resuscitation (CPR) and ventilation. Within hours of getting him to the hospital, we were faced with several decisions. Tests revealed no blood flow to his brain
due to massive swelling, and he was on a ventilator with several medications to keep his vital organs going.
While we were waiting, we talked about organ donation. We did not have the opportunity with our younger son, and particularly because this was our only surviving child, we felt it would be important to have something good come out of this tragedy.
The conversation with the physicians turned to whether or not he would be a good candidate for organ donation. We talked about the need to establish that he would not breathe on his own for 10 seconds while off the ventilator.
On Monday morning, a meeting was called to advise us that he was not meeting the criteria of the breathing test, and to help us understand what that meant: either to forget about donation and let him go, or to wait it out and try again.
Their son died shortly thereafter. The parents emphasized two points. First, although they left the hospital believing that their son’s tissues would be used, they were told later that a metabolic condition (acetylcholinesterase deficiency) disqualified him as a tissue donor. The presence of this condition was known; its effect on organ and tissue donation was not. Had this been clarified sooner, the “false hope” of tissue donation could have been avoided. Second, organ donation could not take place because neither the hospital nor the organ procurement organization had experience with, or a protocol for, non-heart-beating organ donation. As the father stated:
It is difficult for us to understand how we could allow our son to die with one set of criteria, but could not let someone else live because of another set of criteria.
In the second case, a mother donated her son’s tissues in the aftermath of his suicide. As a former critical care nurse and a donation coordinator, she was personally and professionally committed to donation.
I think the first thing that went through my mind about donation was exactly that assumption: Well, of course I should do this. I had talked with my children about it, and I knew that my son had a donor designation on his license, but at the same time, I also know the power that parents have over their children. My other children said, “Did he have a choice; would he have done that if he had not been your son?” I don’t know, and that is troublesome, too, sometimes to think about.
My biggest concern was that having worked on the inside of the field, that I wasn’t sure what would be left with me in terms of how I would remember him:, would I lose the memories of him as my son, and would he always be a clinical picture in my mind. That was a big concern to me.
But we did go ahead and we donated tissues, because he was not able to be an organ donor. But I thought in many ways that as important as tissue donation is, I wish we could have donated organs. I think under the circumstances, because of the care that was given to him immediately at the time and had the hospital had the protocol in place at the emergency department, we probably would have done that.
This mother emphasized how important it is not to make assumptions about what patients and families may or may not want, and how important it is for them to be able to trust the health care system and the care that is being provided to a family member.
Death is the great equalizer; it doesn’t matter who you are. When it happens you are at base level, and it takes a lot of energy to just think. The other thing I believe we should always consider is the issue of trust. I often think how hard it is for people who don’t have an advocate close to them to get through the system—how much more difficult it must be for them, to be in a situation where death and donation are options.
In each of these cases, the parents followed their own feelings and values as well as their childrens’ in coming to a decision about donation. In the first case, the parents learned only later that their son had signed a donor card; in the second case, the mother knew that her son had signed a donor card but had second thoughts about whether it represented his wishes accurately. In both cases, the loss of the option to donate organs was a source of deep regret to the families and compounded their feelings of loss.
Clearly, these two accounts do not predict how all families will think and feel when coming to a decision about organ and tissue donation. However, these accounts provide some insight into what families go through in a traumatic end-of-life situation and about their needs for accurate information and timely, sensitive support.
What do families want to know? One workshop presenter suggested that families seek answers to three basic questions:
Is my loved one really dead?
Will he or she feel any pain?
What do I have to do?
These broad but fundamental questions indicate the kind of information and reassurance that families seek when organ donation is being considered. They suggest a broad outline of the information and support that patient care and donation staff can offer to assist families in coming to a decision about donation.
Meeting Family Needs for Information and Support
Decisions about organ donation are made in a crisis situation. Generally, the person who becomes an organ donor is a previously healthy person stricken by a sudden, unanticipated, life-threatening event. At a time when grief and shock make it difficult to comprehend what has happened, families must make complicated, difficult decisions, including a decision about organ and tissue donation (Batten and Protas, 1987; DeJong, et al., 1998; Riley and Coolican, 1999).
Patient and Family Support
Sensitive, sustained interaction and support are essential elements in end-of-life care for all patients and families. Physicians, nurses, OPO staff, social workers, and clergy interact with and support patients and families during this time. Their sensitivity and skill can made a tremendous difference to patients and families. Planning and coordinating these interactions helps to meet patient and family needs with reliable, readily accessible support.
During organ and tissue donation, particular needs and concerns arise for families, and particular planning and coordination need to take place in order to address these needs and concerns adequately. The division or decoupling of organ donation from patient care creates an additional level of complexity. In order to avoid conflicts of interest, discussions about withdrawing life sustaining treatment must be kept separate from discussions about non-heart-beating donation. However, after these discussions have taken place and the decisions have been made, workshop participants suggested that involving both patient care and donation personnel in discussions with families can be particularly helpful in providing consistent information and support. Careful communication and coordination between the separate teams is needed to avoid interruptions or inconsistencies in information and support.
Workshop participants also suggested bereavement support and family advocacy as particularly valuable arrangements for supporting families during and after the death of a loved one. These services, staffed and funded by the OPO or the hospital, can provide an essential anchor for bereaved families. Most importantly, such services contribute to ongoing support and follow-up as the family continues to deal with its loss. Immediate support while the patient is in the hospital should carry over into referrals for ongoing support and counseling services after the patient has died and donation has been accomplished.
The OPO becomes involved with the family when the patient has been identified as a possible donor or when the family raises the question of donation. A trained professional approaches the family, explains the process of donation, and obtains consent. While recognizing the value of such a framework for ensuring that all families are offered the option of organ and tissue donation in a skilled manner, workshop participants viewed the consent process as a part of a
larger process of information, support and trust that should inform and support families regardless of their decision about donation.
Finally, workshop participants stressed that the arrangements for non-heart-beating donation should place as few impediments as possible in the way of family visiting and leave-taking. Generally, the family can be present when life sustaining treatment is withdrawn in the intensive care unit (ICU). After cardiac and respiratory functions have ceased, the patient must be moved to the operating room (OR) within minutes for organ removal. If cannulae are placed and cold perfusion of the organs is initiated, family visiting can continue for an hour or more. Alternatively, some programs have been able to arrange for life support to be withdrawn in the OR with the family present. The family leaves the OR immediately after death has been declared so that organ recovery may proceed.
Not all families wish to be present when life support is withdrawn. Not all require a prolonged period of visiting after death. However, the committee emphasized the need to make whatever arrangements are most comfortable for the family, and to avoid undue isolation and separation between the patient and the family at the end of life.
Patient and Family Information
Workshop participants engaged in extensive discussion about how best to provide patients and families with information about non-heart-beating organ donation and with consistent support during and after the donation process. Participants emphasized the need for close communication between hospital and OPO staff—to provide a clear understanding of what donation options can be offered, and how donation will proceed.
While conflict of interest concerns prevent the OPO staff from being involved in the decision to withdraw artificial support, early communication between the patient care team and the donation team (1) helps clarify what donation options are open to the patient and family, and (2) ensures that personnel will be available to talk with the family about donation as soon as possible after the decision to consider donation has been made.
Communication between the patient care and OPO teams helps to provide the family with complete and accurate information about the non-heart-beating donation process: what procedures will be carried out, and how and where the withdrawal of support will take place. Patient care and OPO staff are involved in different aspects of these arrangements, so the coordination of their efforts maintains quality care at the end of life.
Part the workshop discussion focused on the development of a family information brochure and how such a brochure might be used to support patient-and family-centered care during non-heart-beating organ and tissue donation.
Both the committee and the workshop participants endorsed the concept of such a brochure. It can serve as a valuable tool for families—providing consis-
tent, comprehensive, and readily accessible information at a time when it is difficult to absorb and retain such information. It can supplement personal interactions and discussions with donation coordinators and provide a point of reference during and after the donation process.
The committee and workshop participants discussed the content, audience, and possible uses for such a brochure, based on a draft brochure provided for review. Substantial agreement was achieved on six points to be considered before offering an informational brochure to families. The draft brochure was revised in response to these points and is included as a resource for hospitals and OPOs that may wish to develop their own educational materials (Appendix D).
The separation between the decision to withdraw support and the decision to donate should be maintained; the discussion of donation, accompanied by the brochure, should not precede the decision to stop treatment.
The sample brochure is intended specifically for families who have already made the decision to withdraw life-sustaining treatment and are considering organ and tissue donation. It does not cover the full range of options for end-of-life care and/or donation. Comprehensive information for families at the end of life will, of course, cover all of these options.
The brochure is not a substitute for personal contact and communication between the family and the donation team. The sample brochure is intended to serve as a supplement to personal discussions with families who are considering non-heart-beating donation.
Sensitivity to the family’s feelings of loss and grief is essential to the content and language of the brochure. A patient- and family-centered brochure will focus on patient and family options and concerns, particularly on the option for family to be present during the withdrawal of support. The need for organs and tissues is an appropriate component of the brochure, not its main focus.
Any decision about organ and tissue donation should be guided by the instructions, wishes, and values of the dying person. By the time donation is considered, the patient usually is unable to make his or her wishes known. The family’s role in acting according to wishes and values of the dying patient and the family must be emphasized.
The sample brochure should be distributed on a limited basis for focus group discussion and feedback involving donor families, donor organizations, care providers, donation professionals, and the public. Feedback should be obtained from hospitals and OPOs with varying levels of experience with non-heart-beating donation and from such specialty areas as critical care and neurology.
Other informational pamphlets and brochures have contributed to the development of this sample brochure on non-heart-beating donation and can contribute to future development and review. The committee reviewed brochures on rapid organ recovery, organ donation, bereavement, and brain death (Hartford Hospital, Northeast Organ Procurement Organization, National Kidney Foundation,
Washington Hospital Center). The donor family bill of rights, developed by the National Donor Family Council of the National Kidney Foundation (Appendix D) provided particularly helpful guidelines for providing information and support to donor families. Within a comprehensive, well-thought-out process, a family brochure can provide a valuable tool for families to refer to before, during, and after organ donation.
Patient and Family Diversity
Family needs for information and support vary greatly. There are individual differences in the quantity and detail of information sought, the time required to reach a decision, in the need for emotional support, and the level of confidence in health care providers. In addition, ethnic, cultural, and economic differences can contribute to misunderstandings and doubts in the medical setting.
In general, health care providers represent the mainstream culture. Their language, explanations, attitudes and values assume a common perspective that some patients and families may not share. Workshop participants focused on three ways in which these differences may contribute to gaps in communication and understanding about organ donation.
First, those who have been marginalized in our society (minorities, people of color, and the poor) may lack faith in the health care system and the organ procurement process. A history of adverse or demeaning encounters with authorities and institutions can undermine trust and bring a high index of suspicion to encounters with health care providers (Blackhall et al., 1998). Scrupulous attention to and respect for the needs and concerns of the patient and family are prerequisites for patient- and family-centered care. In a situation of limited trust, such respect is fundamental to maintaining faith in and support for organ donation (Creecy and Wright, 1990; Schutte and Kappel, 1997).
Second, beliefs about illness, death, and the body may affect attitudes about organ donation. Although almost all mainstream religious denominations in the United States support organ and tissue donation, support for donation is not universal among all cultural and religious backgrounds. An example of this was provided at the workshop (Cook et al., 1999):
Persons with a Native American cultural heritage comprise the dominant ethnic minority [in rural Montana] and tribal representatives have registered grave reservations about any procedures that infringe upon the dying process. Two hospice nurses who work with different populations [have found] that it is common for people to stay with the newly dead body of a loved one for some hours after death, until there comes a time when the survivors “just feel” that the dead one has actually “left” and it is appropriate to remove the body.
Although this is only one example, it illustrates how different experiences and beliefs can affect attitudes towards organ donation and appropriate care for the
dying. Respect for diverse beliefs requires sensitivity to situations where the discussion of organ and tissue donation may be troublesome to families. Sensitive efforts to ascertain interest in organ donation can identify patients and families for whom donation is not an option.
Finally, financial considerations may exert undue influence on decisions about treatment and donation. Workshop participants noted that that an estimated 43 million people in the United States lack health insurance: 16% of the population, or one in six people under the age of 65 (Carrasquillo et al, 1999; Findlay and Miller, 1999).
In addition, it has been found that socioeconomic status is a major factor in determining whether kidney patients are placed on a waiting list for transplantation (IOM, 1999, p. 37). In this context, workshop participants raised major concerns about the possible effect of their inability to pay for treatment on a family’s decision to stop treatment or donate organs.
Published data on the relation between financial constraints and treatment decisions is very limited. A single report was found in the literature of a correlation between financial strain and a preference for comfort care over life-extending care (Covinsky et al., 1996). This study found that financial burden was one of several factors associated with a preference for comfort care. This preference was found to be associated as well with severity of illness, functional dependency, depression, anxiety, and pain.
While the evidence of an association between lack of financial resources and the decision to forgo treatment is limited, socioeconomic differences create severe inequities between those who have resources to pay for treatment and those who do not. Those who donate may be providing a benefit for others while they or their families lack adequate health care (Eggers, 1995; Schutte and Kappel, 1997; Alexander and Sehgal, 1998).
Other reasons for declining organ and tissue donation have been identified in the literature: dissatisfaction with the care provided, lack of knowledge of the patient’s wishes, lack of sensitivity in the request for donation, concerns about brain death, perception of bias in the allocation of organs, and doubts about the efficacy of transplantation (Creecy and Wright, 1990; Franz et al., 1997; McNamara and Beasley, 1997; DeJong et al.,1998). These factors indicate that patient and family attitudes and preferences about donation vary widely. A patient and family centered approach to donation recognizes and responds to this range of concerns.
Workshop participants saw a need to identify clearly the costs of non-heart-beating donation and to ensure that families do not incur additional costs because of donation. Further study and clarification of payment issues is necessary.
When organ donation follows death by neurological criteria, the declaration of death marks the point at which the cost of care shifts from the hospital and the patient to the OPO. The costs of medical intervention after death become part of the cost of organ procurement and are paid when organs are placed for transplantation. Covered costs include lab tests, tissue typing, fluids, medications, and mechanical ventilation, as well as physician, intensive care unit (ICU), and operating room (OR) charges. Patient costs may be incurred if care is continued in the expectation of organ donation but treatment is stopped or the patient dies before the neurological criteria for death are met (Grossman et al., 1996).
In non-heart-beating donation, death is not declared until after support has been withdrawn. Thus, no “bright line” separates patient care costs from donation costs. First, a decision is made to withdraw life-sustaining treatment. Then for a period of time that can vary from a few hours to a day or more, the costs of intensive medical treatment continue to accumulate.
The 1997 Institute of Medicine (IOM) report recommended that families should not incur any costs for non-heart-beating donation that would not be incurred if donation did not take place (IOM, 1997b, p. 63). Above all, when the family is told that organ and tissue donation will not involve additional costs, this commitment must be met. Current mechanisms for covering the costs of organ and tissue recovery vary considerably among OPOs (IOM, 1999, p. 115). These costs must be examined thoroughly and modified as necessary for the non-heart-beating donor situation.
The committee identified five points for further consideration:
Mechanisms must be developed to define and meet the direct costs of donation-related patient care. The costs for intensive care are a gray area. The patient who becomes a non-heart-beating donor may incur additional ICU costs between the decision to stop treatment and the decision to donate. The patient who becomes a donor after death by neurological criteria incurs no costs after death has been declared, but incurs them during the period of testing required to establish that death has occurred.
The issue becomes even more complicated when a patient is evaluated as a potential donor but does not donate. When donation follows death by neurological criteria, the OPO covers the costs of patient care after death has been declared. However, one study of donation costs found that in a third of the cases reviewed, consent was given for donation but donation did not take place because neurological criteria for death were not met (Grossman et al., 1996). In these cases, charges for care were passed on to families and third party payers even though care was directed towards a goal of donation. Non-heart-beating donation makes it possible for death to be established and donation to proceed in such cases, but it highlights the need for clear guidelines for the point at which the OPO assumes the costs of patient care.
Indirect costs associated with non-heart-beating donation have to be considered as well. Required referral can be expected to increase the number of patient referrals and necessitate increased OPO resources for evaluating potential donors. Expanded donor criteria also contribute to the supply of organs as well as to the cost of organ recovery (Jacobbi et al., 1997). Concerns over these costs may deter some OPOs from participating in non-heart-beating donation.
Prospective payment and managed care have a strong impact on the way in which hospital costs are allocated and covered. Third-party payers have an interest in distinguishing patient care costs from donation costs and limiting their payment obligations to the costs of patient care. The current approach (described at the workshop) of opening a new billing account when the decision to donate has been made, billing donation-related costs to this account, and auditing the bills retrospectively may not be sufficient to resolve payment questions.
Further information is needed before specific recommendations can be made for paying the costs of non-heart-beating donation. Workshop participants suggested the value of a roundtable discussion among OPOs, hospitals, third-party payers (public and private), and federal agencies to review the costs of non-heart-beating donation, current payment arrangements, and possible modifications in reimbursement. Public and private reimbursement practices should not deter non-heart-beating donation.
Organ and tissue donation is an important option in end-of-life care. Efforts to keep this option open demonstrate respect for both patient and family wishes. Clear, comprehensive, locally developed and public protocols provide a means for organ and tissue donation to be carried out when patients die after the withdrawal of life-sustaining treatment.
Donation provides clear benefits to those in need of transplantation. The desire to benefit those in need motivates many families to request or agree to donation. However, a patient- and family-centered approach to donation emphasizes that the benefit to others is made possible only through the commitment of patients and families to salvage some benefit out of profound loss.
In a patient- and family-centered approach to donation, the compassionate care of patients and families is paramount. Such an approach treats organ and tissue donation as one among several options at the end of life. It focuses on patient and family wishes and needs. By honoring patient and family needs, it supports both the willingness of patients and families to donate and the benefits of transplantation.
Neither a protocol nor a family brochure can address all of the needs and concerns of patients and families. These needs and concerns begin with the traumatic event that leads to donation; for the family, they extend through many years of living with loss.