Volume 38, Issue 4 , Pages 496-504, October 2009
Development of a Standard for Hospital-Based Palliative Care Consultation Teams Using a Modified Delphi Method
Article Outline
- Abstract
- Introduction
- Methods
- Results
- Discussion
- Acknowledgments
- Appendix. Hospital-Based Palliative Care Consultation Team Standard
- Structure
- Process
- References
- Copyright
Abstract
Although palliative care consultation teams are rapidly being disseminated throughout Japan as a result of government policy, the role of these teams has not been standardized. The aim of this study was to develop a hospital-based palliative care consultation team standard. We adopted a modified Delphi method to develop a standard. Twenty-seven multiprofessional panelists were selected according to two criteria: adequate experience as part of a palliative care consultation team and representative of 16 palliative care-related organizations. Panelists rated the appropriateness of 33 statements in a provisional standard, which was generated by the authors, using a nine-point Likert-type scale in a first-round survey. We set two criteria for agreement: the median value was 8 or more, and the difference between the minimum and maximum was 4 or less. There were 15 disagreements in the first-round survey. Based on discussions through e-mails and a panel meeting, these 15 statements were dealt with as follows: one was rejected, one was combined with another statement, three were unmodified, and 10 underwent minor revisions. Moreover, two statements that generated agreement were divided into two statements each. Consequently, the number of statements was 37. In a second-round survey, three statements engendered disagreement and were modified. At the end of the process, there were 37 statements in four areas: “philosophy and policy,” “structure for care provision,” “contents of activities,” and “quality assurance and care improvements.” This standard may be useful as a clinical activity guide as well as a method to evaluate palliative care consultation teams.
Key Words: Palliative care, palliative care consultation team, standard, modified Delphi method, cancer
Introduction
There is increasing awareness of the suffering of patients with pain, other physical symptoms, and psychosocial distress.1, 2 As a result, specialized palliative care services have proliferated worldwide.3, 4, 5, 6 In Japan, the Ministry of Health, Labour, and Welfare has strongly supported the dissemination of specialized palliative care as a part of the National Cancer Program. Since National Medical Insurance started to cover inpatient palliative care units (PCUs) for terminal cancer patients in 1990, PCUs have been a dominant palliative care service. However, more than 90% of cancer deaths occur in general wards,7 and it has been reported that the care of cancer patients is inadequate.8, 9, 10 With the consideration of this situation, palliative care consultation services have been covered by National Medical Insurance since 2002, and it became mandatory for Regional Cancer Centers to establish palliative care consultation teams. The number of Regional Cancer Centers is now 351.11
In this way, palliative care consultation teams are being rapidly disseminated as a result of government policy. However, the role of such teams has not been standardized. The government released only six statements regarding the entity of the palliative care consultation team:12 1) a palliative care consultation team should include a palliative care physician and nurse and provide specialized palliative care for cancer patients; 2) specialized palliative care can be provided at outpatient clinics; 3) the palliative care consultation team holds care meetings to discuss patient symptom management at least once a week; 4) sufficient information is provided to cancer patients; 5) the attending physician, nurses, and the palliative care consultation team provide patients with information and education regarding palliative care before discharge, collaborating with their home care doctor; and 6) a palliative care network with other hospitals and home care agencies in the same region is established. Although a standard for palliative care developed by Hospice Palliative Care Japan exists,13 it originally targeted the activity of PCUs and it is not detailed enough for new palliative care consultation teams to understand what they should do.
In Western countries, where palliative care consultation teams were developed from the early 1990s, palliative care standards comprising a wide range of palliative care services have been proposed.14, 15, 16, 17 However, it is inappropriate to apply them directly to Japan because of a different social background and health care system. Thus, Japan needs its own standard specific to palliative care consultation teams.
“Consultation” has been practiced in Japan, and the general style is for consultants to play a more direct role in referrals. Palliative care consultation, in contrast, remains the primary responsibility of the referring team, which provides advice and gives recommendations.18 Moreover, emotional and educational support for the referring team is also an important role of the palliative care consultation team, in addition to the addressing of patients' problems.19, 20 Therefore, consultation by a palliative care team crucially differs from conventional consultation. For a new palliative care consultation team to function effectively and smoothly, we need to provide guidance, including the concrete step of consultation. The aim of this study was to develop a hospital-based palliative care consultation team standard.
Methods
We adopted a modified Delphi method21 to develop a palliative care consultation team standard.
Development of a Provisional Standard
To develop a provisional standard, we adopted the following procedures: First, the authors discussed the basic assumption of this standard and decided that it should be a fundamental standard, designed to show new palliative care consultation teams what to do at the very least. The subject was cancer patients because palliative care in Japan mostly targets such patients presently, and we have insufficient clinical experience of palliative care for non-cancer patients. The concept of the Donabedian model was applied because this standard was expected to be used for evaluation as well, and the framework of the standard was referred to existing standards and manuals on palliative care.13, 14, 15, 17, 22 Second, one author (T. S.) generated statements in line with the framework based on a literature review.6, 13, 14, 15, 17, 22, 23, 24, 25, 26, 27, 28, 29 Third, the authors discussed the appropriateness and coverage of the statements to reach a consensus regarding validity and then the provisional standard was formulated, consisting of four domains and 33 statements.
Expert Panel Selection
As there are no universally accepted criteria for the selection of experts using this method,30 we selected expert panelists to create a multiprofessional panel based on the following criteria: 1) clinicians with adequate experience as part of a palliative care consultation team and 2) representatives of palliative care-related organizations.
Criterion 1From the palliative care consultation team registration data of the Japanese Society for Palliative Medicine (December 2006) and the 2007 annual conference data of Hospice Palliative Care Japan, palliative care consultation teams that started their activity before April 2005 and received more than 80 referred patients per year were selected. Next, we contacted clinicians whose experience as part of a palliative care consultation team spanned over at least two years, and authors agreed that their activity levels were high within the palliative care consultation teams. One group of panelists comprised five physicians, two psychiatrists, and five nurses, showing diversity regarding hospital types (cancer center, university hospital, and general hospital).
Criterion 2We contacted 16 palliative care-related organizations (Table 1) by mail and asked them to participate in this study and recommend a panelist. As a condition to be a panelist, we proposed an extensive knowledge of palliative care and work experience within/with palliative care consultation teams. The total number of panelists was 27 experts (one panelist was recommended by two organizations).
Table 1. List of Palliative Care-Related Organizations Participating in This Study
| Japanese Society for Palliative Medicine |
| Japan Psycho-Oncology Society |
| Japan Society of Clinical Oncology |
| Japanese Society of Medical Oncology |
| Japan Society of Pain Clinicians |
| Japanese Society for Therapeutic Radiology and Oncology |
| Japanese Society of Cancer Nursing |
| Japanese Nursing Association |
| Hospice Palliative Care Japan |
| Japanese Society for Pharmaceutical Palliative Care and Sciences |
| Japanese Society of Pharmaceutical Health Care and Sciences |
| Japanese Association of Social Workers in Health Services |
| The Japanese Psychological Association |
| The Association of Japanese Clinical Psychology |
| The Japanese Physical Therapy Association |
| Japanese Association of Occupational Therapists |
Data Collection and Analysis
First, each panelist was asked to review 28 related reports.6, 19, 24, 26, 27, 28, 29, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51 The reason why we asked the panelists to review these was to standardize their knowledge regarding the roles and activities of palliative care consultation teams, as such teams are relatively new in Japan, before study commencement.
Second, two months later, we implemented a first-round survey, mailing a questionnaire with the outline of a provisional standard to each panelist. Each member was asked to rate the appropriateness of each statement using a nine-point Likert-type scale (inappropriate 1–3, intermediate 4–6, and appropriate 7–9). In cases where panelists were unfamiliar with items due to their specialty, “incapable of rating” was also prepared. Panelists who rated a statement as less than 6 were asked to give the reason. We set two criteria for agreement: the median value was 8 or more, and the difference between the minimum and maximum was 4 or less. A summary of the first-round survey was sent to each panelist and author, and disagreements were discussed by e-mail for two weeks. We asked the panelists, especially those who would not be able to attend a panel meeting, to give their opinions.
Third, after discussion by e-mail, an expert panel meeting was convened on January 19, 2008, in Tokyo to discuss statements causing disagreement face-to-face. At the meeting, a summary of the first-round survey and discussion through e-mail was distributed. After the panel meeting, a summary of the meeting and a revised version of the standard were sent to all panelists to confirm corrections or determine whether there were additional opinions.
Fourth, we implemented a second-round survey using the same method as in the first-round survey, and a revised version of the standard based on the expert panel meeting. For statements considered inappropriate, the relevant panelists were contacted by e-mail individually and we tried to reach a compromise.
This study was conducted from April 2007 to March 2008. The protocol was approved by the Institutional Review Board of the Graduate School of Comprehensive Human Sciences, University of Tsukuba. All statistical analyses were carried out using the statistical package SAS version 9.1 (SAS Institute, Inc., Cary, NC).
Results
The backgrounds of the panelists are summarized in Table 2. Of the 27 panelists, 25 had experience working as a member of a palliative care consultation team and the mean working period was 5.3 years.
Table 2. Background of Panelists (n
=
27)
| Sex | |
| 15 | |
| 12 | |
| Specialty | |
| 11 | |
| 3 | |
| 7 | |
| 2 | |
| 1 | |
| 1 | |
| 1 | |
| 1 | |
| Years of clinical experience (mean | 18.9 |
| Experience in PCT activity, yes | 25 |
| Years of PCT activity, n | 5.3 |
All panelists responded to the first-round survey, and 17 (63%) participated in the panel meeting. In the first-round survey, 15 of 33 statements led to disagreements. We analyzed the reasons for the 15 disagreements and found that the minimum goal of a palliative care consultation team differs among the members, and the range of palliative care consultation team activities is not clear, whether for hospital inpatients or for the community. During the discussions by e-mail and in the panel meeting, the following were agreed: 1) the standard should be achieved within five years, taking into account the wide-ranging skills of teams, not the minimal or lowest acceptable practices; 2) this standard should be applied to cancer patients first and then expanded to other diseases in the future; and 3) this standard should focus on consultation activities within a hospital.
According to the results of the first-round survey and discussion at the panel meeting, the 15 statements that produced disagreement were dealt with as follows: one was rejected, one was combined with another statement, three were unmodified on clarifying the basic assumption, and 10 underwent minor revision. Moreover, two other statements were divided into two statements each for explicitness. Consequently, the statements numbered 37.
In the second-round survey, all panelists responded. As a result, three of 37 statements produced disagreements. As disagreement was expressed by only one panelist for each statement and seems to have occurred from a misunderstanding of the statements, we contacted the panelists and gave more precise explanations. Subsequently, agreements were obtained from the panelists. For satisfactory statements that included some minor comments such as expressions, we revised them based on a discussion among authors. The final version of the standard is shown in the Appendix.
Discussion
We developed a palliative care consultation team standard using a modified Delphi method and using a multiprofessional expert panel. The standard comprised 37 statements encompassing four areas: “philosophy and policy,” “structure for care provision,” “contents of activities,” and “quality assurance and care improvements.” It is important in terms of developing a standard to use a clear methodology. Furthermore, this standard would be of help to both new and existing palliative care consultation teams as a guideline. In addition, the activities of palliative care consultation teams could be evaluated based on this standard, which contributes to improvement in the quality of care.
In the first-round survey, 15 of 33 statements led to disagreement. This is a poor result compared with other studies using the Delphi method.52, 53 The outcome suggests that what is viewed as the minimum of palliative care consultation team activities differs from person to person, as mentioned previously, and it might be difficult to achieve a common understanding of the role of palliative care consultation teams, not only for palliative care consultation team users54, 55 but also for palliative care consultation team members themselves. The role of palliative care consultation teams became clearer using this standard. As a next step, we need to investigate to what extent the palliative care consultation team actually fulfills its role and how effective it is.
Given the lack of a clearly defined role, this standard was rather general. Common elements of palliative care, such as spiritual and bereavement care, were not included. Although spiritual and bereavement care have been acknowledged as essential elements in palliative care in Japan as well,13 it is difficult to actually provide these types of care as a part of daily practice in the acute setting20, 56 and panelists might have believed that it would be difficult to achieve the goal within five years. Another possible reason would be that we tried to include the consultation steps in the standard, and thus, it made the standard a more general one that can be applied to any type of medical care.
Our study had several limitations. First, some statements were not precise enough because we intended the standard to be applied by both new and established palliative care consultation teams. Too precise a description would make it difficult for panelists to reach an agreement. Second, panelists in this study consisted of diverse professionals, but the number of physicians was large. Thus, this standard might be biased to reflect physicians' opinions. Third, palliative care consultation teams cannot be directly evaluated with this standard. For actual evaluation, assessment criteria are needed. Fourth, the clinical effectiveness of this standard remains unclear, although it was developed by clinical experts.
In conclusion, we developed a palliative care consultation team standard consisting of 37 statements in four areas. Although this standard might not be precise, we believe that it is worthwhile in terms of developing a standard using a clear methodology. This standard is helpful both as a clinical activity guideline and as a method to evaluate palliative care consultation teams. As the next step, palliative care consultation team activities should be advanced with this standard, along with the development of criteria based on the standard, and the implementation of further evaluation.
Acknowledgments
The authors acknowledge the work of the members of the expert panel: Nobuya Akizuki, Koji Fujimoto, Takahiro Hashizume, Akitoshi Hayashi, Hitomi Higuchi, Minoru Hojo, Masako Iseki, Hitoshi Kasai, Shiro Katayama, Noritaka Kiyokawa, Makiko Koike, Mayumi Kondo, Fumie Kosako, Yukie Kurihara, Shigeko Matsuyama, Masato Murakami, Sachiko Mera, Keiichi Nakagawa, Masaru Narabayashi, Toru Okuyama, Iwao Osaka, Yoji Saito, Chizuko Takigawa, Miki Toya, Megumi Umeda, Mihoko Umenai, and Masahiro Yabe.
Appendix. Hospital-Based Palliative Care Consultation Team Standard
This standard was developed to define the goal of hospital-based palliative care consultation teams working in hospitals.
Palliative care is administered for all patients with life-threatening diseases. This standard has been devised mainly for palliative care consultation teams for cancer patients, as most patients receiving palliative care in Japan suffer from cancer. However, it can also be applied by palliative care consultation teams to non-cancer patients.
This standard only refers to the activities of the palliative care consultation team in a hospital and does not mention activities in the local community, for the following two reasons: 1) palliative care consultation in the local community is not common in Japan, and there are few authorities on this, although it is expected to become more common in the future, and 2) the activities of palliative care consultation teams in hospitals and local communities are markedly different; thus, it would be difficult to devise a standard covering both activities.
Definition of the Terms Used in This Standard
Palliative CareAn approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual (the World Health Organization definition).
Palliative Care ConsultationSupport to enable health care professionals to efficiently deal with difficult issues regarding palliative care.
Direct CareMedical intervention and care provided by a palliative care consultation team directly to patients and family.
Structure
I. Philosophy and Policy
1. PhilosophyPalliative care consultation teams educate and support health care professionals and provide direct care for patients and their families by providing clinical knowledge and skills to improve the quality of life of both parties.
2. PolicyThe palliative care consultation team should:
II. Structure for Care Provision
1. Occupational StructureIt is desirable for palliative care consultation teams to include the human resources mentioned below or for the teams to have access to such professionals whenever needed:
The palliative care consultation team should:
Process
III. Contents of Activities
1. Clinical ActivitiesThe palliative care consultation team should:
The palliative care consultation team should:
The palliative care consultation team should:
IV. Quality Assurance and Care Improvements
The palliative care consultation team should:
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This work was supported by a Health and Labour Sciences Research Grant for Clinical Cancer Research.
PII: S0885-3924(09)00703-9
doi:10.1016/j.jpainsymman.2009.01.007
© 2009 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Volume 38, Issue 4 , Pages 496-504, October 2009
