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Abstract
At the International Gynecologic Cancer Society (IGCS) Global Meeting in 2023 held in Seoul, South Korea, we held a Presidential Plenary Session focusing on palliative care (https://www.youtube.com/watch?v=TBDIoQ50xgI). We hereby reaffirm the significance of this session, express the Palliative Care Declaration made by the IGCS, and describe our action plan for the future.
- Palliative Care
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Background
According to the International Agency for Research on Cancer, the annual incidence of gynecologic cancer worldwide is approximately 1.4 million cases, accounting for 680 000 deaths. Combined, the gynecologic cancers are the second most commonly diagnosed and cause of death for women worldwide, behind only breast cancer (2.3 million cases and 685 000 deaths annually). Among the gynecologic cancers, cervical cancer remains the most commonly diagnosed and the leading cause of cancer-related death in many of the low- and middle-income countries (LMICs, also known as low and medium Human Development Index (HDI) regions) of the world.1 The vast majority of cervical cancer cases (84%) and deaths (88%) occur in the LMICs where palliative care access is restricted or even non-existent. In contrast, the cumulative incidence and mortality is 2–4 times lower in the highest income countries.2 Furthermore, the suffering associated with cervical cancer is “more complex and severe than that caused by other illnesses” and disproportionally affects those in the LMICs.3 For example, 84% of women with cervical cancer suffer moderate to severe pain, the highest rate among all cancers, and most patients “experience some combination of moderate to severe physical, psychological, social and spiritual suffering”.3 Additionally, many LMICs face disparities in access and distribution of essential pain medication such as opioids due to competing priorities including access to clean water and food as well as regulations prohibiting opioid prescribing. Consequently, access to and prioritization of means to relieve suffering are further impeded.4
One approach to relieving suffering is palliative care. The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem 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”.5 The WHO considers palliative care as an essential component of healthcare and integral to Universal Health Coverage, a consideration supported by scientific societies such as the American Society of Clinical Oncology.6
Palliative care is often confused with hospice care. Palliative care is appropriate at any point in a serious illness and can/should be provided at the same time as and in addition to life-prolonging treatment. Recent evidence suggests that palliative care, in addition to improving quality of life, improves overall survival.7 8 The extent of palliative care, including timing and needs, varies by individual. Therefore, it is important to understand the core principle that palliative care is provided when and to the extent needed. There is no need to choose between treatment approaches and there are no prognostic requirements.
Hospice care is a specific form of palliative care for those at the end of their life, often defined as a life expectancy of 6 months or less. In this setting, curative-intent treatment is stopped in many patients.9 A contemporary view of palliative care is shown in Figure 1.
Contemporary view of palliative care.
Palliative care5:
Provides relief from distressing symptoms:
Gynecologic cancer and its treatments often lead to distressing symptoms such as pain, fatigue, nausea, and dyspnea. Palliative care focuses on effective symptom management to enhance the patient’s comfort and well-being, promoting better adherence to treatment plans and improving overall quality of life. Palliative care is not just for cancer patients; it is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness” regardless of the cause of the underlying life-threatening illness. In cancer treatment settings, palliative care specialists work collaboratively with oncologists to manage side effects, striving to ensure that patients experience minimal discomfort and maintain their functionality.6 7
Aims to optimize the patient’s quality of life at every moment:
The principle of affirming life and viewing dying as a natural process is fundamental to the philosophy of palliative care. This approach emphasizes providing compassionate care that respects the dignity and autonomy of individuals facing life-limiting illnesses. Rather than focusing solely on extending life at all costs or hastening death, palliative care seeks to optimize quality of life for patients and their families. By addressing physical, emotional, social, and spiritual needs, palliative care aims to alleviate suffering and promote comfort and dignity throughout the dying process. This principle underscores the importance of holistic care that honors the individual’s values, preferences, and goals, empowering them to live fully until the end of life on their own terms. It represents a shift away from a purely medicalized approach to death and dying towards a more compassionate and person-centered model of care.
Integrates the psychological and spiritual/existential aspects of patient care:
The emotional and psychosocial impact of cancer can be profound. Palliative care provides counseling, emotional support, and assistance with coping strategies for both patients and their families. This support helps alleviate anxiety, depression, and existential distress.10
According to the Spirituality Reference Group of the European Association of Palliative Care (EAPC), “spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature and to the significant or sacred”.11
Facilitates communication and shared decision-making:
Palliative care facilitates open and honest communication between healthcare providers, patients, and their families. It helps in clarifying treatment goals, discussing prognosis, and engaging in shared decision-making to ensure that care aligns with the patient’s values and preferences.10
Offers a support system to help patients live as actively as possible until death and to help the family cope during the patient’s illness and in their own bereavement:
By focusing on optimizing well-being and promoting comfort, palliative care empowers patients to engage in meaningful activities and maintain a sense of purpose and dignity. This holistic approach extends beyond the individual patient to encompass their family members, who often experience profound emotional and practical challenges while caring for their loved one. Palliative care serves as a vital lifeline for families, offering guidance, education, and emotional support throughout the patient’s illness journey. From assisting with difficult decisions to providing respite care and counseling, palliative care teams help families navigate the complexities of caregiving with compassion and understanding. Moreover, palliative care continues to provide solace and support to families during the grieving process, recognizing that bereavement is a deeply personal and challenging experience.
Uses a team approach to optimize the continuity and comprehensiveness of care to address the needs of patients and their families:
Palliative care involves an interdisciplinary approach, coordinating care among various healthcare professionals to address the diverse needs of patients with gynecologic cancer. This collaboration ensures that the patient receives comprehensive care tailored to their specific situation.12
Enhances quality of life and may also positively influence the course of illness:
Palliative care aims to improve the overall quality of life for cancer patients by alleviating physical symptoms, managing emotional distress, and fostering spiritual well-being and reducing the side effects of treatments. This aspect is particularly relevant in the context of ongoing oncology treatments, where managing symptoms can contribute to better treatment adherence and efficacy. This holistic approach contributes to a better patient experience throughout the illness trajectory.13
Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications:
Integrating palliative care early in the course of the illness has been associated with improved patient outcomes. Studies have shown that early palliative care in conjunction with standard oncologic care can lead to better symptom control, increased quality of life, and even prolonged survival in certain cases.6 Early integration of palliative care allows for proactive advance care planning, helping patients articulate their treatment goals and preferences. This empowers patients in decision-making and also ensures that their wishes are respected throughout the disease trajectory. Earlier end of life conversations are also associated with better quality of life and improved caregiver bereavement adjustment.14
Worldwide, the unfilled need for palliative care is enormous. Sadly, the WHO estimates only about 14% of people who need palliative care receive it, the majority of whom are in high-resource countries.15 Palliative care is still grossly inadequate or non-existent in most parts of the world.16 The Lancet Commission on Global Access to Palliative Care and Pain Relief17 estimated that:
more than 61 million people annually experience health conditions associated with suffering that could be significantly ameliorated through palliative care;
25.5 million people die with serious health-related suffering that requires palliative care (~50% of all deaths);
at least 80% of people lack access to even the most basic palliative care interventions such as pain medication.
International Gynecologic Cancer Society’s Commitment to Palliative Care
The International Gynecologic Cancer Society (IGCS), representing healthcare professionals, patient advocates, and individuals dedicated to the advancement of women’s health, hereby affirms the critical importance of palliative and supportive care in the comprehensive management of gynecologic cancers globally.
As such, we declare IGCS’s commitment to the following principles:
1. The Right to Palliative and Supportive Care
Access to quality palliative and supportive care services is a fundamental human right and disparities in access should be addressed with the goal that all patients, regardless of their geographic location, socioeconomic status, or any other factors, receive equitable care.
2. Integration of Palliative and Supportive Care
We advocate for the seamless integration of palliative and supportive care into the holistic care of those with gynecologic cancer, ensuring that it is an integral part of cancer management from the time of diagnosis onward, and not a last resort.
3. Education and Training
We encourage healthcare professionals, including the entire interdisciplinary gynecologic oncology care team, to receive essential education and training in palliative and supportive care to improve their understanding, skills, and knowledge to alleviate symptoms and improve patient outcomes. Additionally, educational opportunities for patients and the public should be made available.
4. Research and Innovation
We call on researchers, institutions, organizations, funding bodies, and governments to invest in studies that advance our understanding of palliative and supportive care interventions in gynecologic cancer, build capacity, and aim for continuous improvement, innovation, and value-based healthcare.
5. Patient-centered Approach
We emphasize the importance of adopting a patient-centered approach in gynecologic cancer care, which includes active communication, shared decision-making, and respect for patients’ values and preferences.
6. Global Collaboration
We commit to fostering global collaboration among healthcare providers, policymakers, organizations, patients and patient advocates, and other stakeholders to develop and implement policies and programs that prioritize palliative and supportive care in gynecologic oncology.
International Gynecologic Cancer Society’s Palliative Care Pledge and Call to Action
IGCS is calling on its members to prioritize and advocate for equity in access to palliative and supportive care worldwide and work with their care teams to ensure patients receive the compassionate quality care they deserve. Take the IGCS pledge (Figure 2) and complete these actionable steps to work towards closing the gaps between curative and palliative care.
International Gynecologic Cancer Society (IGCS) palliative care pledge.
1. I pledge to communicate with all patients under my care about their palliative and supportive care needs from the time of diagnosis onward, and not as a last resort
I will obtain or develop culturally-appropriate, patient-centered educational material regarding palliative and supportive care to give to all patients with newly-diagnosed, progressive or recurrent gynecologic cancer.
I will inquire about and support my institution in conducting an annual continuing education program on effective communications skills for health professionals.
2. I pledge to prioritize formal education in palliative and supportive care for myself and encourage education among my team members
I will educate myself and encourage those on my institution team to complete formal essential education and training in palliative and supportive care by May 2025 (eg, IGCS Palliative Care Certificate Program).
I will contact my departmental and institutional leadership advocating for the incorporation of mandatory palliative care education within training programs, including medical students, residents, fellows and non-physicians (eg, nursing, social work, mid-level providers).
3. I pledge to integrate palliative and supportive care into the treatment plans for all patients with newly diagnosed, progressive, or recurrent gynecologic cancer under my care, through primary integration or specialist referral
I will work to establish and maintain formal relationships with palliative and supportive care services for my patients.
4. I pledge to advocate for patients’ rights to palliative and supportive care
I will share the IGCS Declaration on Palliative and Supportive Care with my colleagues and institutions working with regional and national health ministries and express my support for palliative care to be included as an essential package of care under universal health coverage.
I will contact my regional and national health agencies asking for their support.
I support the formation of National Palliative Care Associations to work with the Ministries of Health to realize the implementation and promotion of palliative care services.
5. I pledge to advocate for the inclusion of health-related quality of life measures in the study of gynecologic cancer treatment
I will advocate for my institution to commit to studies dedicated to the management of patient suffering related to the care of women with gynecologic cancers.
I will volunteer to serve as a research site for one study investigating palliative and supportive care for women with gynecologic cancer in 2025.
I will contact my governmental agencies, research funding bodies and community organizations expressing my support for research in palliative and supportive care for women with gynecologic cancer.
I will commit to reading at least one peer-reviewed article related to palliative and supportive care each quarter and share the information with my team.
6. I support global collaboration and IGCS’s efforts to maintain partnerships with international palliative care organizations to develop and implement policies and programs that prioritize palliative and supportive care in gynecologic oncology
In recognition of the profound impact that palliative and supportive care can have on the lives of those facing gynecologic cancer, we affirm our commitment to the above principles and pledge to disseminate this Declaration widely. We will work tirelessly to ensure that all patients receive the compassionate, comprehensive, and patient-centered care they deserve. By doing so, we honor the intrinsic value and dignity of every life affected by gynecologic cancer and promote the highest standards of healthcare and compassion worldwide.
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Footnotes
X @keiichifujiwara, @srconnor, @ WHPCA, @N_Fujiwara, @nissiemburu, @maryceiken
Correction notice This article has been corrected since it was first published. The license has been updated to open access CC BY-NC. 15th August 2024.
Contributors All authors contributed equally to the information presented in this manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.