Abstract
Abstract
Background:
Although bereavement programs are a common element of palliative medicine and hospice programs, few health care institutions currently offer universal bereavement services to all their patients. The elevated risk of serious physical and mental health problems among the bereaved is a strong argument for the development of universal institution-based bereavement programs as an element of quality care for family members of all patients who die.
Objective:
We describe the development of the bereavement program at Dana-Farber Cancer Institute (DFCI) where we conceptualized bereavement services as a preventive model of care.
Design:
We identified education, guidance and support as the primary constructs of the program. The essential components include a formal acknowledgement of the death of the patient by the cancer center, information about grief and what to expect, individual visits to assess coping, and staff support and education.
Subjects:
One hundred and forty bereaved families completed a survey about the bereavement program.
Results:
The findings indicated that the formal letter of condolence and the bereavement guide had a positive impact on the grieving of the respondents. Contact from the patient's oncologist and nurse was especially well received.
Conclusions:
Bereavement programs can both help bereaved individuals adapt to their loss, and positively impact hospitals by enhancing the reputation of the hospital within the community and providing an avenue for identifying opportunities for improvement in care processes. We recommend that all hospitals implement basic bereavement programs for families of all deceased patients as the standard of care.
Introduction
B
Since its inception, bereavement care has been a core element of hospice care; although it has been endorsed as a central component of high-quality end-of-life care by the palliative care movement,6–8 the development of bereavement services has lagged behind that of other elements of palliative care. In the United States today, even though approximately 65% of deaths take place in institutions, 9 very few hospitals, cancer centers, and nursing homes offer any kind of organized bereavement services for the families of their patients. The bereaved typically have to seek out such support on their own, which can be difficult for many who are often overwhelmed by grief, reluctant to do so, 10 and/or unsure as to whether services will help. 7
Bereavement care comes in many forms (e.g., individual psychotherapy, peer group support, and group therapy) and is offered by a range of organizations, including hospices, nonprofit community organizations, and faith-based groups, in addition to informal care offered by individual providers, such as primary care physicians and other clinicians. As a result, the types of intervention vary greatly according to the setting in which the patient received care at the end of life, and the provider's discipline, orientation, and experience. Truly integrating the core precepts of high-quality palliative care, as outlined in the guidelines from the National Consensus Project for Quality Palliative Care, 8 into the care of patients and families requires the development of new models of cost-effective bereavement services for the families of patients who die.
In this article we begin by discussing the value of hospital-based bereavement programs, followed by the goals of bereavement care from a psychological perspective. We next describe the development of the hospital-wide bereavement program at Dana-Farber Cancer Institute (DFCI) in Boston. We outline the primary constructs of the model, the components that we identified as essential, and the challenges we faced. We conclude with an initial evaluation of the program and our ideas about next steps.
Why Should Hospitals Offer Bereavement Programs?
More than 20 years ago, Witter, Tolle and Moseley 11 reported on the development of the bereavement program at Oregon Health Sciences University Hospital, in which they discussed the provision of “good care” from both a clinical and administrative perspective. The bereavement program was implemented in response to a faculty research study in which 105 bereaved spouses of patients who had died at the hospital during 1983 were interviewed about their experiences. 12 Overall, their findings demonstrated poor bereavement follow-up to the families of deceased patients, which they believed impacted the bereaved's adjustment and perceptions about the hospital. In particular, they found that only 36% of spouses had contact with physicians from the hospital post-death and that 55% of the total sample still had at least one unanswered question one year after the death. 12
From an administrative point of view, Witter et al.
11
concluded that bereavement programs provide optimal care, benefit quality assurance and risk management, and enhance the community image of hospitals. It would appear that during the past 20 years very few hospital administrators have adopted this perspective. Building upon Witter et al.'s
11
conclusions we suggest that carefully structured hospital bereavement programs create value for hospitals because they have the potential to:
(1) extend the optimal care of the patient to include the family (2) enhance staff satisfaction and lessen the burden of care (3) provide information that can be used for quality improvement (4) benefit risk management (5) enhance the image of the hospital in the community
Extend the optimal care of the patient to include the family
The National Consensus Project for Quality Palliative Care (NCP) 8 endorses bereavement support for bereaved family members and views a bereavement program as a core component of a palliative care program. Recently, the NCP 8 revised its clinical practice guidelines to include the essential elements of a bereavement program. These elements include bereavement risk assessment and appropriate psychosocial support and referral, culturally and linguistically appropriate information about grief, and the availability of services for a minimum of 12 months. We extend these recommendations to encompass the family members of all patients who die while being served by an institution, not just those served by the palliative care program.
Helping bereaved families navigate the many changes they face following the death of a significant loved one, whether or not the deceased received palliative care services, promotes adaptation. Indeed, research demonstrates that the provision of palliative care and hospice services is associated with enhanced family satisfaction13,14 and improved bereavement outcomes,15,16 suggesting that family members of patients who do not receive services from palliative care might be at heightened risk of poor adjustment. Drawing on the cognitive behavior therapy model,17,18 receiving information about the nature of grief and its likely course can help the bereaved understand their experience, which in turn may increase their sense of control.
Enhance staff satisfaction and lessen the burden of care
For clinicians who work closely with the families of dying patients, the abrupt ending of the relationship with the family when the patient dies may be experienced as a loss, and evoke feelings of helplessness and grief. The cumulative effect of unprocessed emotions associated with the death of patients can also lead to burnout. 19 Many clinicians find the experience of providing bereavement follow-up, or ensuring that it is provided by other team members, to be a rewarding and a healing conclusion to the relationship with the patient and the family. 20 Others find the extra time and emotional difficulty of dealing with bereaved family members to be overwhelming. For both groups, we believe that the existence of a bereavement program can provide a sense of support and professional satisfaction, knowing that family members receive appropriate care following the death of the patient. This suggestion, while supported by anecdotal evidence, warrants further investigation.
Provide information that can be used for quality improvement
Hospitals and clinicians do not, in general, systematically collect information about the quality of care provided to patients with serious illness after a death. Standard patient satisfaction surveys (e.g., Press Ganey) exclude this population. The existence of a bereavement program creates an avenue for hospitals to learn more about the experience of patients and their families. Contact with bereaved family members, including structured evaluations of family members' experiences during the patient's illness and final days, can provide critical insights into ways to improve the care of patients with advanced illness and their families.
Benefit risk management
Family members frequently describe a “double loss”—the loss of the patient and the loss of the care team—when a loved one dies. The absence of an acknowledgment of a death can be interpreted as abandonment, which can evoke anger or hurt directed towards the physician or the institution, especially in cases where the family perceives that death occurred suddenly or unexpectedly, or when there has been a long or intimate association between the patient and the provider and/or institution. 21 Clinicians often are uncomfortable in reaching out to bereaved families after a death, and feel worried they will say the wrong thing. Bereavement staff, ideally trained in mental health, can play a critical role in mitigating these barriers by educating and supporting clinicians about offering condolences to bereaved families and assessing risk, and by being a safety net for struggling families when clinicians are unable to engage with families after a death. Communication and the quality of the physician-patient relationship is one of the most critical elements in influencing malpractice suits.22,23 Anger, feelings of abandonment and hurt after a death can lead some bereaved people to look for someone to blame, and to seek comfort through a legal action. Bereavement staff, in providing good clinical care to families, can support families in constructively processing their emotions, concerns, and questions about the patient's death. When appropriate, bereavement staff can encourage the family to meet with the clinical team or with Patient and Family Relations, which can prevent problems from escalating.
Enhance the image of the hospital in the community
People are more likely to remember recent experiences associated with an event rather than earlier experiences, referred to in memory research as the “recency effect.” 24 The memories of events that occur surrounding the patient's death are often intense and long-lasting.
In any service delivery model, a satisfied customer increases the likelihood of repeat business. While health professionals often balk at thinking in business terms regarding the care of their patients, a business model can provide a useful framework to improve the work we do. Even though many factors can impact satisfaction, it seems reasonable to assume that if families are satisfied with the care that their loved one received in a given hospital and the bereavement follow-up they were provided, they might be more likely to hold a positive image of that hospital. Specifically, they might be more likely to (1) use the hospital again; (2) refer others; and/or (3) support the hospital by making a monetary donation or volunteering their time.
Goals of Bereavement Care
From a psychological perspective, the process of grieving involves adaptation to change brought about by loss. With this in mind, the goals of bereavement care are twofold: first, to help facilitate this adaptation so that bereaved individuals can continue to live meaningful and fulfilling lives, and second, to identify those individuals at risk of difficult bereavement reactions and recommend treatment in an attempt to prevent the development of serious physical or psychological disorders.
Given that the majority of bereaved individuals will cope without professional help, and that there are growing concerns about professionals intervening too early with this natural process and medicalizing grief, 25 we propose that bereavement programs be conceptualized within the framework of prevention. Specifically, programs with a psycho-educational focus can be designed to facilitate adaptation by offering bereaved individuals a guide for their bereavement. Providing information about what they might expect in the months ahead, including what is considered normal grief and what signs might indicate the need for professional help, can greatly reduce an individual's anxiety about how they are coping. Further, educating family members about behavioral strategies such as establishing a routine, increasing pleasant activities, focusing on self-care, and maintaining social connections are also practices that can help bereaved individuals adapt to their changed circumstances.
Dana-Farber and Brigham & Women's Cancer Center Bereavement Program
Background
Dana-Farber and Brigham & Women's Cancer Center (DF/BWCC) officially launched a hospital-wide bereavement program for adult patient services in November 2010. Before this, although the palliative care program offered some bereavement services to family members of patients who received palliative care services, there was no systematic approach to bereavement care at our institutions. Bereavement contact varied considerably by team and individual clinician.
In 2009, the Department of Psychosocial Oncology and Palliative Care, with enthusiastic collaboration from the DFCI Patient and Family Advisory Committee, started a program for bereaved families by creating a new position of Director of Bereavement Services within the Department to develop and coordinate a comprehensive bereavement program for all adult services. Currently, DF/BWCC experiences approximately 2800 deaths a year of adult patients who, in the six months prior to death, were seen at least twice in our cancer center. This selection criterion was chosen to distinguish established patients from those who came to DFCI for a second opinion. A separate pediatric oncology bereavement program is coordinated through Boston Children's Hospital.
Program development considerations
Drawing from our backgrounds in psychology and psychiatry, our thinking was informed by the existing data about bereavement interventions, especially cognitive behavior therapy models, and by our clinical experience of working with bereaved individuals who often are not only overwhelmed by deep sadness, but also unsure of what to expect. We identified education, guidance, and support as the primary constructs of our model with an emphasis on screening for risk where possible. In addition, we were strongly focused on the “value” (quality/cost) of our program, and developed a streamlined, sustainable program that utilizes community resources and facilitates physician bereavement follow-up by removing barriers. Our institution-wide bereavement program is staffed by a psychologist (.8 FTE) and an administrative assistant (.25 FTE). These positions are funded through the Department of Psychosocial Oncology and Palliative Care on the DFCI operating budget.
Given that grief is a unique experience and that individuals will need different things at different times, we adopted a “smorgasbord approach” when designing the program, which we expand upon in the next section. We were also mindful that the program needed to attend to the needs of the high volume of patients from far away, including internationally.
Education, guidance, and support model
When we began planning the program we posed the question: What should the essential components of a bereavement program be? To answer this question we considered the experience of grief and loss associated with normal bereavement in Western countries and identified what bereaved individuals commonly report they need,26–30
especially in the initial months post-loss. We also interviewed clinicians from our Bereavement Task Force and members of the Patient and Family Advisory Committee. We identified these needs as:
• Acknowledgment of the loss by others • Information about the grieving process and how it might progress • Opportunity to ask questions and seek answers • Identification of family members at high risk of prolonged grief • Opportunity to express thoughts and feelings and to tell their story • Opportunity to meet others who have experienced a similar loss • Information about community resources for support
Based on these needs, we defined five essential components of our bereavement program and created services to align with each component as described below:
1. Acknowledgment of the death of the patient by the cancer center and clinicians a. Institutional condolence letter b. Dissemination of condolence guidelines and sympathy cards to staff c. Memorial events 2. Information and education about grief a. A psycho-educational bereavement guide b. Website with dedicated bereavement pages c. Seminars for families about coping with grief 3. Support services a. Risk screening and referral information b. Individual assessment, short-term support, and referral information c. Seminars and support groups based on CBT principles
29
d. Telephone support e. Online DFCI bereavement community through CancerConnect 4. Staff support and education a. Seminars about the nature of grief, offering condolences, and dealing with the burden of care b. Bereavement rounds c. Debriefing with teams 5. Program evaluation and research a. Evaluation of the bereavement program b. Risk screening
The DF/BWCC bereavement program offers a range of services, which reflect these five essential components. Clinicians are strongly encouraged and supported in writing bereavement letters to families through an educational program. Each bereaved family receives a condolence letter acknowledging the death of the patient from the leaders of the cancer center, a psycho-educational bereavement guide, “When Grief is New,” outlining the nature of grief, an invitation to join the online bereavement community, and a listing of the various groups and seminars held at the cancer center. Bereavement information is also available on the website. If a family member chooses to ‘opt-in’ to attend a support group or seminar or for an individual visit, a more tailored approach emphasizing guidance and support is offered. Regular educational efforts for staff include seminars about the nature of grief and loss, offering condolences, and dealing with the burden of care. Table 1 summarizes a number of factors that need to be considered when developing a bereavement program.
Challenges
Once the model was conceptualized, a number of challenges needed to be considered. These included and are discussed below:
1. Identifying the bereaved individuals 2. Managing the large volume of deceased patients 3. Geography and access to DFCI 4. Maintaining current family contact information 5. Determining the frequency of contact from the program 6. DFCI connection 7. Risk assessment 8. Notifying staff of patient deaths
Identifying the bereaved individuals
Identifying the bereaved was our greatest challenge, because there was no systematic way to track the deaths of outpatients. Information Systems developed a matching process to identify deceased adult patients. To do this, death data from the Social Security Death Index, inpatient oncology deaths from the Brigham & Women's Hospital, deaths from affiliated hospices or nursing homes, and staff notifications of deceased patients from family contacts were collated. Specifically, death data are matched by a number of identifiers including social security number, first name, last name, and date of birth. Once this matching process to identify deceased patients was established, the ‘bereaved list’ could be generated, using the family contact information listed by the patients in our administrative database. Eligibility criteria for the bereavement program included those family contacts of patients who had had at least two visits in the six months prior to their death. We made the decision that patients who had come to DFCI for a second opinion would not be eligible for the program. Each month, Information Systems generates the bereavement list for the program. The list is stored in a secure site and is used to generate the mailings using the MS Word mail merge program.
Since the program began in late 2010, we have made over 12,000 initial contacts by mail to bereaved family members. During the second month of the program an error occurred when the matching process identified one of our patients, with a common first and last name, as deceased when this was not the case. The patient coincidentally had the same last name and date of birth as a deceased woman but a variation of her first name. As a result of this error, the matching process was tightened to prevent further errors, and only those patients where there is a 100% match are marked as deceased in the medical record. Since that time, we have had no further matching errors. The bereavement program currently reaches out to approximately 240 family members of deceased patients each month.
Managing the large volume of deceased patients
Once we determined the number of deaths per year, we were able to use these data to help tailor the specifics of the program. Initially we had considered periodic mailings throughout the year similar to hospice bereavement programs but recognized that this was impractical given the large volume of family members. As a result, we decided to focus more on providing information through a mix of print and web-based technologies. We also decided upon a short-term supportive approach where bereaved family members of our deceased patients can attend seminars and/or groups, in addition to one to three individual visits for support and to assess coping, free of charge.
Geography and access to DFCI
DFCI is located in the densely built-up medical area of the city of Boston, where patients travel considerable distances for treatment. While patients and their families have often made the trip into Boston, it is not always practical or desirable for bereaved families to receive their bereavement care here.
These limitations led us to adopt a ‘smorgasbord approach’ where families pick and choose what they need and when. Specifically, we wanted to offer as much information as possible on the website and provide opportunities for families to return to the hospital to say ‘goodbye’ to staff and the institution as a whole, if they wish. To help address this geographic challenge, we added an online community through Dana-Farber CancerConnect for bereaved family members of our patients where they can post comments. This private online site provides a forum for bereaved family members to connect with others and is moderated by bereavement staff. Each time a member posts a comment, the moderators receive an e-mail notification. There is a disclaimer on the site, which states that the site is not a substitute for professional help. To date, there have not been any posts from members expressing suicidal ideation, which was something we considered when we agreed to offer this as a service.
Maintaining current family contact information
Obtaining accurate contact information for family member(s) and keeping the list current is a significant challenge. On average we reach approximately 80% of identified bereaved family members, taking into account returned mail and missing contact information. Access management services are working toward trying to develop a system to review the contact information on an annual basis to improve this percentage.
Determining the frequency of contact from the program
Given the volume of bereaved family members, we decided that we would contact the listed family member on one occasion only, while emphasizing how they could contact us in the future or access information on our website. Once the bereavement mailing is sent, the onus is on the bereaved to ‘opt-in’ if they would like further support. Periodically we have sent out targeted mailings, typically to bereaved individuals from the past year and within state, to advertise a specific program, including ‘Coping with the holidays’ and a ‘Young adult spouse loss group,’ but volume makes this impractical on a regular basis. We have also considered sending a first-year anniversary card but to date have decided against this because of the volume. Smaller hospitals might choose to do this if the numbers are more manageable.
DFCI connection
Many bereaved individuals develop a strong institutional connection to DFCI itself. Even though their loved one died, they hold in high regard the care he or she received and the positive relationships they formed with clinicians. This connection sometimes leads to bereaved individuals wanting to receive their bereavement care at DFCI even if it means traveling long distances. In some cases, the connection can be very intense and can represent an effort to hold on to the loved one who died, or become part of a dysfunctional grieving process; it can also create a barrier to referral to the community. Our approach, however, provides family members an opportunity to return to the cancer center for short-term support and to say ‘goodbye’ with the offer of a community referral as needed.
Risk assessment
Identifying family members at risk prior to the death of a patient poses a challenge for a number of reasons, including high patient volume and access to family members pre-death, given that not every patient sees a social worker or palliative care clinician. We are in the initial stages of testing a brief screening tool to help clinicians screen family members for bereavement risk. The social worker assigned to the patient will make a condolence call to the identified bereaved approximately one to two weeks post-death, and using his or her clinical judgment and knowledge of the family situation, will make recommendations about bereavement care based on known risk factors. These recommendations include seeing his or her primary care physician, a community-based mental health clinician, and/or receiving an early call from our bereavement staff.
Notifying staff of patient deaths
Providing clinicians with information about the deaths of their patients in a timely manner to facilitate bereavement follow-up is also a significant challenge, and required a new process. Working with our privacy officer, Information Systems developed a process to send separate deceased patient lists to each disease center on a monthly basis.
Evaluation of the program
To understand the impact of the bereavement program, we surveyed 815 bereaved family members of patients who died at DFCI during a four-month period in the second half of 2013. The same family contact who had originally been sent the bereavement mailing between September 1, 2013 and December 31, 2013 was mailed the survey in May 2014. One hundred and forty people (17% response rate) completed the survey, which limits the generalizability of the findings. We were interested to learn (1) which components of the program bereaved family members found most helpful and (2) what other types of support the program could offer to recently bereaved family members.
The survey consisted of 21 questions and the responses were anonymous. Nine questions included a yes/no dichotomous response, and a five-point Likert scale rating asking about the impact of specific components of the bereavement program. Four questions requested demographic data, and the remaining eight questions were open-ended, asking about follow-up by both the bereavement program and the patient's clinical team. This study was approved by the institutional review board of DFCI.
What did we learn?
Of the 140 bereaved family members who completed the survey, approximately 67% were female, 66% were 60 years or older, and 81% had lost a spouse or partner. From their responses we learned that:
The letter of condolence from the presidents of DFCI and BWH had a positive impact
From 132 responses, 62% said they remembered receiving the letter of condolence and of those, approximately 69% indicated that this letter had a positive or somewhat positive impact on their grieving, as endorsed by the corresponding values on a five-point Likert rating scale. Further, 30% reported neither a positive or negative impact on their grieving, while 1% indicated a negative impact.
The bereavement guide had a positive impact
From 134 responses, 78% stated that they remembered receiving the guide and of those, approximately 72% reported that it had a positive or somewhat positive impact on their grieving, with 23% reporting that the impact was neither positive nor negative. The remaining 5% indicated that the guide had a somewhat negative or negative impact on their grieving.
Contact from the patient's oncologist and nurse was especially well received
Of the respondents who completed the question asking whether they received a note or call from the patient's oncologist, approximately 65% answered that they did receive a note or call. Of those, 90% indicated that this contact from the oncologist had a somewhat positive or positive impact on their grieving. Similarly, when asked if they received a condolence note or call from their loved one's nurse, approximately 46% who completed this question answered yes. Of those, 93% indicated that this contact had a somewhat positive or positive impact on them. We intend to include these findings in our educational series about the importance of offering condolences to bereaved families.
Other requests for additional support varied greatly
When asked what else we could have offered that might have been helpful in dealing with their loss, the most common responses were “don't know” or “nothing.” Other responses included more contact from the medical team to offer condolences and answer questions, and also more information about local resources.
Next steps
Given our conceptualization of bereavement programs as a preventive model of care, our next goal is to formalize our bereavement risk screening tool to help us identify more readily those 10% to 20% of bereaved individuals who are at risk of developing prolonged grief. 2 We then plan to systematically intervene early with ‘at-risk’ individuals to offer support and resources, including early telephone contact by bereavement staff to assess coping and to help connect the individual with resources either at DFCI or within their community. We are also considering using an Internet-based therapist-assisted intervention called HEAL (Healthy Experiences After Loss), which was piloted at DFCI, as it demonstrated promising results in the prevention of prolonged grief disorder. 31 Internet-based interventions are not only cost effective and scalable, but they are especially attractive because they can remove barriers to seeking care such as distance, time constraints, impaired mobility, and stigma.
Conclusion
Hospital-based bereavement programs have the potential to benefit families and staff alike. Not only can they help facilitate the adjustment of the patient's family post-death, but they can also improve the image of the hospital and lessen the burden of multiple losses on staff. We recommend that all hospitals implement at least basic bereavement programs for all families of deceased patients, within the construct of prevention, as a standard of routine care consistent with the National Consensus Project of Quality Palliative Care. Such programs not only serve as road maps to help recently bereaved individuals navigate more easily the change in their lives brought about by loss, but facilitate the identification of those individuals who may be at risk of prolonged grief, paving the way for early intervention.
Footnotes
Acknowledgments
The authors would like to acknowledge the Bereavement Task Force and the Patient and Family Advisory Committee from Dana-Farber Cancer Institute.
Author Disclosure Statement
No competing financial interests exist for Dr. Block. Dr. Morris receives royalties on the sales of her book Overcoming Grief: A Self-Help Guide Using Cognitive Behavioral Techniques.
