Journal of Psychological Science and Research

This article aims to review the literature on palliative care at home. Most palliative care patients prefer home care, and 70% of terminally ill cancer patients want to die at home. Caring for a patient with palliative care needs at home is a challenge for the family/primary caregiver. Family support is a key concept in palliative care. The family/primary caregiver hopes to find appropriate responses to their needs to ensure health and social care with the highest quality and dignity for their loved ones. Empowering the community can be challenging, however, compassionate communities are an increasingly visible strategy in palliative care capacity building and support networking.

Keywords: Palliative care, Family, Caregiver burden, Compassionate community

The World Health Organization (WHO)¹ defines palliative care as care that aims to improve the quality of life of patients and their families, who face problems arising from an incurable and/or serious disease with a limited prognosis, through the prevention and relief of suffering, with the use of early identification and rigorous treatment of not only physical problems, namely pain, but also psychological, social and spiritual problems.

The European Association for Palliative Care (EAPC) defines them as “active and total care for patients whose illness does not respond to curative therapy, with the control of pain and other symptoms, social, psychological and spiritual problems being paramount; they are interdisciplinary care that involves the patient, family and community in their objectives; they should be provided wherever the patient wishes to be cared for, whether at home or in hospital; they affirm life and accept death as a natural process and, as such, they neither anticipate nor postpone death, and seek to preserve the best possible quality of life until death”.

Both palliative care and Human Rights are based on the principles of human dignity, universality and non-discrimination, in which the Charter of Human Rights clearly states that the right to health must be respected, allowing equal access to all people, including prisoners, minorities, illegal and institutionalized people, to preventive, curative and palliative treatments/services.²

Palliative care is a public health problem and need due to the number of people affected and the need for experts to deal with these situations, due to the universality of death, which is associated with normally avoidable suffering, due to the impact on survivors and the economic impact on family members and the state.²

This care, in itself, has a significant impact on the quality of life of patients and their families,³ on the team, on other health professionals in the institutions, on the way chronic diseases are approached, on the training of other professionals, on promoting the provision of comprehensive care, on reducing hospital mortality, and on early involvement in the patient's therapeutic process.²

Historically, health care was provided in the home, and the physician was able to transport the few medications and supplies available to his or her patient's home. With the exponential development of medicine and associated technologies, health care was transferred to the hospital.⁴

Advances in medicine have contributed to an increase in the longevity of the population, with an increase in chronic diseases, some of which become incapacitating and have no cure, leading to situations of incurable, progressive and advanced disease. In this sense, there is a need for investment in palliative care, to provide the best possible quality of life to the patient/family/main caregiver.⁵

Despite improvements in hospital care, hospitalization can be felt as an aggression, where patients lose their dignity and privacy, being exposed to a group of unknown people and the accelerated pace of the hospital routine.⁴ During hospitalization, some negative consequences can also be listed, such as the risk of infections, falls, use of physical restraint, urinary incontinence and functional decline.

For an adequate public health strategy to be in line with the WHO philosophy, it is essential to promote home care. The World Health Organization (WHO) defines home care as “the provision of health services by a formal or informal caregiver, in the home, in order to promote, restore or maintain the highest possible level of comfort, convenience and health, including care provided to dignify dying”.¹

Several studies highlight an inescapable fact in the provision of care to terminally ill patients: the preference for spending the last days and dying at home.⁶ Most patients in palliative care prefer home care and 70% of terminally ill cancer patients would like to die at home.⁷ In Portugal, most people (more than 50%), faced with a serious illness and with one year left to live, would also wish to die at home.^2,8

If we consider that quality health care is the optimal provision of health services and that it necessarily incorporates the patient's preferences in a shared decision-making process, home palliative care also assumes fundamental importance in Portugal in the development and implementation of a National Palliative Care Program.

In Portugal, there is little literature available regarding home care. The few resources available at home are mainly dedicated to palliative care, with 11 home units nationwide, according to information from the Portuguese Association of Palliative Care.

Home visits are mostly carried out by family doctors. These are an important resource, given that they know the reality of the patient and the family. However, as is the case globally, there has been a sharp reduction in this practice, with Portugal having one of the lowest rates of home visits, for various reasons, including the lack of time available for this activity. Also, under the responsibility of primary health care, there are 278 integrated continuing care teams distributed throughout the country, which provide home services to people in situations of functional dependence, terminal illness or in the process of convalescence, whose situation does not require hospitalization, but who cannot leave their homes.

In recent decades, an approach has emerged on the part of health services with the aim of making families co-responsible for providing care. It is in this approach that the conduct of community health professionals, belonging to a health system, must be guided towards supporting and helping these families/caregivers, with palliative patients at home, to have an adequate response to their needs, to promote quality care.⁵

Adequate treatment of pain and other symptoms does not depend on the constant physical presence of a specialized palliative care service, because if the family is properly trained and supported by professionals 24 hours a day, it will be able to promote quality care. Home care aims to support and teach the family, allowing them to care for the patient by actively participating in improving their quality of life.⁵ Spending the last days of your life at home should always be an option for the patient and family. Returning home may in some situations increase the patient's autonomy and consequently their self-esteem, allowing them greater control of the situation and participation in decisions. With high-quality home care, this wish can become a reality.

Home palliative care is the appropriate strategy to respect the patient's wishes and adapt care to their preferences, particularly regarding the place of care and death. However, providing care at home is considerably more challenging, and sometimes more burdensome for caregivers, than when the patient is hospitalized.

The family/primary caregiver plays a prominent role, not only as a means of reaching the user, but also as the main promoter of continuity of care. As the family/main caregiver is the greatest ally in home support, it is necessary to be attentive to their needs, because if they are ignored, they entail costs, particularly in terms of physical, psychological and social well-being, putting the continuity of care at risk and which will be visible. Familial Exhaustion/Claudication may occur.

Whatever the illness, it is always considered a crisis, causing stress and anguish in the.⁹ The convergence of several sociodemographic factors means that the responsibility and pressure of care is directed towards the family at home. However, most families are people who do not have specific training that allows them to guarantee the quality of care, nor are they emotionally prepared to take on this role, ending up putting the patient's health and well-being at risk.⁵

Caring at home is not just about meeting instrumental and physical needs (food, mobility and medication). It also entails a cognitive and emotional effort, often unidentified. What happens is that initially the family/main caregiver has no idea of the demand for care that they will have to provide, so that the continuity of the caregiver role can lead to overload/lameness and, ultimately, to caregiver exhaustion, inevitably affecting the well-being of the family nucleus as well as being a risk factor for morbidity and mortality for the family/main caregiver.⁵

From the perspective of family members/caregivers, caring for a family member implies significant changes in family life: they have less time for the family and for themselves, they rest less and work more, depriving themselves of their social life. The patient becomes the center of attention. When care is provided solely by a caregiver, the caregiver often does not ask for support from family and friends so as not to overburden them and feel like a burden to them. Thus, the family/primary caregiver may begin to show signs of Overload/Exhaustion.

A study on family/primary caregiver overload concluded that most families experience overload in caring and feel overwhelmed in terms of: the feeling of overload experienced by the family/primary caregiver in terms of the tension felt when having to care for their family member and also pay attention to other responsibilities, the patient's dependence on the family member/primary caregiver, feeling tired from having to care for their sick family member, feeling that they are the only person their sick family member can count on; Abandonment of self-care, both in terms of self-image and health, referring to not having enough time for oneself due to having to care for one's family member and the repercussions on the health manifested in the caregiver; Fear of providing care/fear of the future associated with fear of what the future may hold for your family member; Loss of social and family role in assuming the role of caregiver due to feeling that they do not have the private life they would like due to their family member and loss of control over their life since their family member's illness manifested; Economic change due to the illness of their family member, as they say they do not have enough money to care for their family member and meet other expenses; Feeling of guilt regarding the inability to do more for your family member.⁵

This leads us to reflect on how responses can be developed to alleviate the burden on families/caregivers and on the need to implement and maintain health teams trained and qualified in palliative care, to minimize the burden inherent in palliative care, improving the quality of life of the patient and family.

The family/primary caregiver has a set of physical, social, emotional, economic and spiritual needs that, if adequate responses are obtained, can reduce the level of overload.

Family support, the formal and informal social network made up of institutions, official public or private services, networks of friends and volunteers, play an important role, as they constitute facilitating factors in controlling problematic situations. If there is no adequate response in the community from properly trained and qualified professionals, the family/primary caregiver will feel lost and not know who to turn to. Therefore, to prevent the family/primary caregiver from entering a crisis, there is a need to promote care aimed at supporting the family/primary caregiver at home through a community intervention policy to minimize the burden of care. In other words, the quality permanence of palliative care patients at home depends on promoting the well-being of caregivers and preventing crises on the part of health professionals.

Some studies show that telemedicine can be beneficial in monitoring patients with palliative needs.^7,10 However, the use of technology could also be beneficial if used to prevent caregiver burden, such as providing emotional or psychological support to the caregiver.

There are some charitable institutions and/or organizations that have volunteer projects aimed at assisting in health care.⁷ Although family/primary caregivers and professionals provide most of the end-of-life care, volunteers perform a variety of roles, such as assisting with recreational and social programs, visiting patients, taking them for walks, and providing companionship and support.¹¹ Volunteers who collaborate with health professionals in caring for patients are very important elements in making care more humane.¹² Hospice volunteers can reduce stress, offer practical care and emotional support, and provide a community connection for dying people and those close to them.^11,13 Volunteers can also intervene in several important aspects to restore or preserve quality of life.

There are many challenges that palliative care faces, the main one being community training. Compassionate communities are an increasingly visible strategy in palliative care training and support networking. These have gained importance within civil society as a response to health promotion in palliative care, encouraging the development of care communities and the humanization of palliative care.¹⁴

Hundreds of compassionate communities have sprung up around the world in recent years. Different models of compassionate communities and cities are being developed, such as in the United Kingdom, Ireland, Scotland, Austria, India, Canada, Australia, Brazil, Colombia and Spain, among others. However, there is no information on how implementation on the ground aligns with core health promotion strategies.

In Portugal, in the PEDCP for the 2019-2020 biennium, compassionate communities are referenced as a strategy for social support, family support and community importance. However, there is no scientific information about compassionate palliative care communities in Portugal.¹⁵

According to Public Health Palliative Care International (Compassionate Communities),¹⁶ a compassionate community is defined as a community development initiative linked to global palliative care, consisting of groups of close neighbours who come together to organize ways to assist people in their community who are living with chronic illness or are at the end of life, their caregivers, and people experiencing grief or loss.

Compassionate communities are community structures of proximity, with the intention of support networks that guarantee the continuity of care and the satisfaction of needs in a neighbourhood logic. These are communities that promote literacy for the end of life. Death, dying, caring and loss are everyone's responsibility.¹⁴

Meeting the needs of terminally ill patients can be complex and needs to encompass multiple domains of symptom management, such as psychological and emotional distress and spiritual care. Studies show that when people live in communities where they are supported, the health of the entire population improves,¹⁷ meaning that communities can have a transformative effect.¹⁸ A compassionate community allows a patient's family and caregivers to be more resilient, less exhausted, and to have a better quality of life at home during the final stages of their life.

Another study demonstrated that compassionate support at the end of life should not be the exclusive response of health and social services professionals.¹⁹ Care networks are essential in supporting families, to prevent loneliness and social isolation from having a negative impact on health and quality of life.²⁰ On the other hand, community empowerment and the creation of a collaborative care network with proximity teams is essential to support patients and caregivers in their most pressing needs.

Most palliative care patients prefer home care, and 70% of terminally ill cancer patients want to die at home. Home palliative care is the appropriate strategy to respect the patient's wishes and adapt care to their preferences, particularly regarding the place of care and death. However, caregiving at home is considerably more challenging, with some studies showing that many families members/primary caregivers report caregiving overload.

Several studies show the benefits of telemedicine, volunteering, and compassionate communities. Empowering the community can be a challenge, however, it would be important to evaluate how strategies can be implemented that foster compassionate communities as a support network in palliative care.

None.

This Review Article received no external funding.

Regarding the publication of this article, the author declares that they have no conflicts of interest.

1. 1. World Health Organization. WHO Definition of Palliative Care. 2025.

2. 2. Capelas ML, Coelho SP. Pensar a organização de serviços de cuidados paliativos. Revista Cuidados Paliativos. 2014;1(1):17-25.
3. 3. Liu X, Liu H, Ying W, et al. Identifying palliative home care needs of patients with advanced cancer: a cross-sectional study. Front Psychiatry. 2025;16:1448973.
4. 4. Alves M. "Hospital at Home": The Reality Inside and Outside of Portugal. RPMI. 2016;23(1):40-43.
5. 5. Ferreira M de F. Cuidar no domicílio: avaliação da sobrecarga da família / cuidador principal no suporte paliativo do doente oncológico. Cadernos De Saúde. 2009;2(1):67-88.
6. 6. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006;332(7540):515-521.
7. 7. Pannuti F, Pannuti F, Tanneberger S. Home care for advanced cancer: Results and challenges. Archive of Oncology. 2010;18(3):79-83.
8. 8. Ferreira RCC, Capelas ML. Morrer no domicílio: fatores associados à satisfação da preferência do doente. Revista Portuguesa De Medicina Geral E Familiar. 2021;37(2):90-98.
9. 9. Kristjanson LJ, Aoun S. Palliative care for families: remembering the hidden patients. Can J Psychiatry. 2004;49(6):359-65.
10. 10. Santos CP, Grisolia AMM, Castro AA, et al. Telemonitoring in palliative oncology care: perspectives of patients and caregivers. ARACÊ. 2024;6(3):4664-4680.
11. 11. Vanderstichelen S, Houttekier D, Cohen J, et al. Palliative care volunteerism across the healthcare system: A survey study. Palliat Med. 2018;32(7):1233-1245.
12. 12. Astudillo W, Egido M, Muñoz J, et al. El voluntariado en las enfermedades crónicas y terminales. Guia de recursos socio-sanitarios y paliativos en Álava, Edita: Sociedad Vasca de Cuidados Paliativos, Paliativos Sin Fronteras. pp.263-285.
13. 13. Vanderstichelen S, Cohen J, Van Wesemael Y, et al. Perspectives on Volunteer-Professional Collaboration in Palliative Care: A Qualitative Study Among Volunteers, Patients, Family Carers, and Health Care Professionals. J Pain Symptom Manage. 2019;58(2):198-207.e7.
14. 14. Leão D, Carqueja E. Comunidades compassivas: uma resposta aos desafios em cuidados paliativos. Motricidade. 2024;20:36-44.
15. 15. Comissão Nacional de Cuidados Paliativos (CNCP) (2019). Plano Estratégico para o Desenvolvimento dos Cuidados Paliativos (2019-2020).
16. 16. Public Health Palliative Care International (PHPCI). Compassionate Cities. PHPCI.
17. 17. Gilbert P. The compassionate mind. Constable & Robinson. 2009.
18. 18. Abel J, Clark L. The Compassion Project: a case for hope & human kindness from the town that beat loneliness. HB. 2020.
19. 19. Walshe C, Dodd S, Hill M, et al. How effective are volunteers at supporting people in their last year of life? A pragmatic randomised wait-list trial in palliative care (ELSA). BMC Med. 2016;14(1):203.
20. 20. McLoughlin K, Rhatigan J, McGilloway S, et al. INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness. BMC Palliative Care. 2015;14(1):1-10.