Summary

In recent decades, palliative home care has become an option for the care of the terminally ill. The case for palliative home care is discussed from the perspective of enhancing the quality of life of terminally ill patients. Formal and informal caregivers play complementary roles, and are both crucial for effective home care. Family coping skills, good symptom control, and appropriate emotional support help to transform this burdensome journey into one that is rewarding and fulfilling.

摘要

過去數十年善終服務為末期病人提供家居服務為另一種選擇。我們從提高末期病人的生活質素的角度加以討論。正式和非正式的照顧者的工作相互補充，是家居照顧的成功關鍵因素。有效的家庭協助，良好的病情控制和適當的情緒支持，有利於家庭把這個沉重的經歷變成有滿足感和回報的旅程。

Introduction

Home and hospital are very different places for patients and health care. In the 21st century, is there any role for home care within hospital-driven health systems? Are we entering a new era of home care? This article will review the application of home care from the perspective of caring for the terminally ill.

The case for palliative home care

Down the centuries, most people died at home. It has only been in recent decades, with the rise of modern technological medicine, that medical care has become institutionalised. With this change, the focus of medicine has shifted from emphasis on quality of life to prolongation of life, and from holistic care to biomedical care. Unavoidably and predictably, more and more chronically ill and terminally ill patients are being cared for in hospitals. Moreover, studies from overseas have shown that many of these chronically and terminally ill patients have unfulfilled wishes and sub-optimal symptom control during their last days, which are often spent in intensive care units.¹ Dying has thus become medicalised in modern hospitals. It is therefore timely to ask questions about where and how to deliver the most appropriate care to these groups of patients. The role of the home care service within the current medical system has been carefully examined by many groups,^2,3 and is beyond the scope of this paper. The argument for home care services is often based on minimising the hospital stay and reducing healthcare costs. However, an even more important argument for providing home care may come from the perspective of the terminally ill person: i.e. the quality of life of the last days can be maximised by home care.^4,5 In some cultures, patients prefer to die at home, even though when pain relief and symptom control are marginally better in in-patient hospices.⁶

Practically, home care can serve several purposes for patients with advanced or terminal cancer:

1. To facilitate the psychological transition that will occur when patients move to the palliative phase from the curative phase.
2. To support patients and their families psychologically and spiritually within their own environment.
3. To maximise symptom control under closer supervision.
4. To enhance patient's control, privacy and autonomy in their own environment so that personal goals can be better attained.
5. To maximise the time the patient spends with their family.
6. To care for the patient and their family as a unit.
7. To ensure choice of place and milieu of dying and death.

The in-patient hospice palliative care service was established in Hong Kong in 1981, with home care service commenced by the Society for the Promotion of Hospice Care in 1985. Currently, over 60% of terminal cancer patients receive hospice palliative care, with a ratio of in-patient to home-care patients of 1 to 4. Dying at home is rare in Hong Kong, compared to the UK and South Korea, where 24% and 66% respectively, of deaths occur at home.⁷ Nonetheless, at any one time, there are around 1,000 terminal cancer patients in Hong Kong being cared for at home, compare to 250 patients cared for by in-patient palliative care units. Hospice palliative home care has been accepted as a standard mode of care for the terminally ill in most parts of the world.⁷

The provision of palliative home care

Home care is defined by the World Health Organization as the provision of health services by formal and informal caregivers in the home in order to promote, restore and maintain a person's maximal level of comfort, function and health, including care towards a dignified death. Home care services can be classified into preventive-promotive, therapeutic, rehabilitative, long-term maintenance and palliative care categories.² In the home setting, care involves health care professionals as formal caregivers and family as informal caregivers. These roles are often complementary.

1. Formal caregiver by a home care team

In a recent survey of 141 home care patients under Haven of Hope Hospital, the interventions provided to terminally ill patients are shown in Table 1. Different models of home care are adopted in different parts of the world,⁸ depending on the local health care structure. The home care team model followed in Hong Kong is a "Palliative care nurse based" team, with input from Palliative Medicine specialists and other multi-disciplinary staff whenever necessary. Palliative home care nurses are trained in palliative care, and they have specialist knowledge and experience that allows them to act as case managers. Using a case management approach, they provide holistic care to their clients after conducting an initial assessment in the patient's home. Based on the patient's condition, needs and expectations of the service; the home care nurse formulates a care plan and acts as liaison and case manager for various services. Palliative care physicians also make home visits to those patients who are too weak to attend the out-patient clinic; and help patients to die at home if that is the wish of the patient. Other health care professionals, such as occupational therapists, physiotherapists, medical social workers, chaplains and clinical psychologists, can visit the patient when indicated.

2. Informal caregiver

Family caregivers bear the major burden when patients are at home. More than often, they have to deal with their own issues of separation and anxiety.⁹ Carers sometimes perceive the pain of the patient to be worse than it actually is.¹⁰ However, in an ethnographic study of home-based palliative caregiving, family caregivers reported enriching experiences, including opportunities for reciprocity, finding meaning in the situation, finding meaning in the caregiving, spending time with the patient and being able to work through their own grief.¹¹ Nevertheless, they also reported negative experiences such as physical exhaustion, intrusion into their private life by medical staff, equipment and supplies, role conflict between being both a family member and a caregiver, and guilt if they later decided on hospitalisation. Their stress was further complicated by their unfamiliarity with and fear of the dying process.¹¹ A local study of informal caregivers of patients with terminal cancer, using the Carer's Assessment of Difficulties Index (CADI), reported restricted social life as the most difficult issue for them, as compared with relationship with the care-receiver, emotional reactions to caring and physical demands.¹² Effective coping by family caregivers depends on an interactive dynamic among the patient, the caregiver, and the health care service provider. Local qualitative research suggests that home care nurses can contribute to family caregivers' empowerment, by establishing an engaged relationship, providing information, knowledge and skills, affirming self-worth and giving reassurance that the patient's care is good.¹³ Moreover, it is worthwhile spending time educating the patient and the caregiver about pain and its management.¹⁴ With understanding of the needs and stresses of family caregivers, palliative home care services are better able to meet these needs and enhance the coping of the family.

Caring palliative care patients at home: dream or reality?

Care for the terminally ill at home is an arduous but rewarding process. There are multiple factors affecting the implementation of home care for a terminally ill person. There are sociological factors (such as family structure and degree of family support); social factors (such as home environment and the availability of social support); health care system factors (such as availability of a home care service and Family Practitioners); and finally patient's and family's expectations, (such as attitudes towards death and dying). >From the health care perspective, physicians should aim at the following targets to enhance palliative care at home:

1. Enhance family coping.
2. Good symptom control.
3. Clear communication, education and preparation of the patients and family caregivers.
4. Accessible and available services, including support from Family Medicine Practitioners.

Factors that facilitate the effective coping of family are listed in Table 2. In real life, a wide gap may exist between reality and the ideal of what a home care team can bring about effectively.

Maximise symptom control at home

A careful assessment, clear communication of the management plan, prescription of medications via an appropriate route with a simple dose regime, and regular monitoring of compliance and the effect of treatment are essential to good symptom control at home. Close collaboration of the physician with palliative home care nurses is of paramount importance.

Drug compliance of palliative care patients at home has been generally unsatisfactory. In a United Kingdom study, the non-compliance rate was as high as 60% and drugs prescribed four times a day were likely to be omitted or their dosages reduced.¹⁵ Avoiding polypharmacy, stopping unnecessary and ineffective drugs, using a simple regime, clear explanation of the use and side effects of drugs, and regular monitoring are means to enhance drug compliance.

In patients with advanced cancer, many have nausea, vomiting, dysphagia, delirium, or gastrointestinal absorptive impairment or obstruction that necessitate a non-oral route of drug administration.¹⁶ Parenteral administration may not be feasible at home due to caregiver's limitations and limited available technological support.¹⁷ Though in some developed countries, high technological home care is being delivered, including intravenous infusion, there have been various difficulties preventing the implementation of such a programme in Hong Kong. Thus, many such patients will be hospitalised solely for administration of parental drugs. Exploration of other routes of drug administration will result in better symptom control at home.

Transdermal fentanyl patches, sublingual lorazepam, transmucosal fentanyl, and sublingual nifedipine are some examples of alternative routes of drug administration. Rectal administration of drugs should also be promoted in the home care setting. Rectally administered medications require minimal family education and expense compared with parenteral infusions.¹⁶ Interested readers can refer to a comprehensive review of rectal administration of drugs in cancer patients.¹⁸ Some drugs that have been used in other countries are listed in Table 3. However, drugs that have been used more frequently locally include paracetamol, indomethacin, dimenhydrinate and diazepam.

A recent systematic review examined 22 studies, including three randomised comparative trials, on the interventions of the home care team.¹⁹ Though the nature of the interventions was very heterogeneous and the evidence was of poor quality in most studies; in general, the outcomes were more positive than negative, indicating improved satisfaction, pain and symptom control when home care services were compared with conventional care. All studies that considered costs suggested lower costs for the home care group.

Conclusion

Home care is a combination of science and art, medical care and social care, formal and informal caring. In addition to the transfer of knowledge and skills, which helps to enhance family coping by problem solving, often it is the connectedness, the emotional and psychological support, and the ready availability that ultimately helps the family to transform this burdensome journey into one that is rewarding and fulfilling. When a person dies, one often says a person goes home. Home, where is it? Can we materialise home care in this technological era? The challenges of home care remain ahead of us.

Key messages

1. Palliative home care has been shown to be an important component of care for maximising the quality of life of the terminally ill patients.
2. The inter-disciplinary palliative home care team supports the physical, psychological and spiritual needs of the patients and their families.
3. The coping of the family as informal caregivers should be enhanced to ensure the effectiveness of home care. 4
4. Symptom control should be maximised. Transdermal, sublingual, and per rectal routes of drug administration can be explored in home care setting.