Social considerations

Recognizing end of life and providing preferences

The palliative care patient cannot be considered without taking into account the family unit, the home, and the community in which they reside.

Management of hospice care at home, hospice, and hospital

The majority of people express a wish to die at home, although in many countries, the majority actually dies in hospital. Access to hos­pice services can assist in bridging the gap. In the United Kingdom, the Gold Standards Framework sets out a framework for improving services. The goals are to enable patients to ‘die well', supported and symptom free. The cornerstone of good community care is communication—between the patient and healthcare providers, and within the network of healthcare providers involved (42). The pal­liative care team can assist in identifying available resources within the family and within the community and empower the family to use them, taking into account the patient's wishes.

In-patient hospice facilities are increasingly reserved for short­term care (usually 2 weeks) comprising symptom control and family respite. Less commonly, patients prefer to die in hospice. If available, hospices provide a far more, gentle, supportive environment than do hospitals where the focus is on curative treatment. Hospitals, too, are starting to incorporate palliative care approaches, even into casualty departments and intensive care units (43).

There is some evidence even in the hospital-centric medical cul­tures, such as in the United States, that the value and importance of palliative home care, particularly for end of life care, is gaining ground.

Environmental considerations

Hospice is generally regarded as an attitude rather than a place and the principles of palliative care can be applied in almost any envir­onment. Wherever possible, a nursing sister or care worker should visit the patient in their own home. Often people nearing the end of life like peace and quiet but others prefer the hustle and bustle of everyday life. Other considerations are stairs, hospital beds, com­modes, and other nursing aids. Hospital beds make nursing of bed­bound patients considerably easier.

Hospital or hospice admission may be required if there are too many or too few people in the home, if the environment is totally unsuitable, or if the needs of the patient are beyond the scope of the family. If hospice or hospital admission is necessary, the aim would be to make the environment as homely and peaceful as possible with family presence and involvement encouraged.

Family/caregiver needs and supports

There is a wide range of grief needs in family members after the death of the patient. For most, the grief goes through standard phases and can be managed with familial and individual support. However, it is worth noting that there is an entity of ‘complicated grief' defined as a ‘persistent complex bereavement disorder... consistent with the notion that complicated grief is a stressor-related condition' (45). This entity should be suspected if the family member shows new cognitive or functional impairments, has difficulty accepting or adapting to the loss over time, and even suicidal ideation. Treatment requires more than simple support and referral for therapy should be considered (46).

Caring for a terminally ill patient can be a drawn-out and ex­hausting process, physically and emotionally. Caregivers will need to be actively supported, individually or in groups, and encouraged to receive help and care for themselves. In addition, healthcare workers need to be encouraged to attend to their own wellness needs.

Despite the many challenges, a time spent facing a life-limiting ill­ness can be a time of healing. Patients and those close to them can be assisted to express their feelings of loss and love. The four important messages of ‘I love you', ‘Thank you', ‘Sorry', and ‘Goodbye' can bring peaceful closure and heal relationships in a deep and meaningful way (47). It might take time to reach this point with sincerity, but the journey is deeply rewarding for patients, families, and care­givers. Support for the family should not end at the death of patients. Bereavement support should be offered and extended to the family