Chapter 43 PALLIATIVE CARE
WHAT IS INVOLVED IN PALLIATIVE CARE?
WHAT IS AN IN-PATIENT HOSPICE UNIT?
An in-patient hospice unit is a place where specialist health professionals care for people with incurable illnesses. Clients often come to a hospice in the last stages of illness and remain until death occurs, or they may be admitted for assessment and relief of pain or other distressing symptoms and then return home. Sometimes clients are admitted for a period of respite care. Respite care may be used to provide a break for a family carer, as a time to evaluate and stabilise a client’s troublesome symptoms, or in some cases to provide a period of 24-hour-a-day support for a client who is experiencing emotional distress such as unresolved anger or high levels of anxiety. The aim of an in-patient hospice unit is to provide expert care in a calm environment that is as home-like as possible. Palliative care units in busy mainstream hospitals are not always able to provide the same calm atmosphere as a hospice. Clinical Interest Box 43.1 provides an example of when an in-patient palliative care unit can help.
WHO CAN RECEIVE PALLIATIVE CARE?
Anyone who has an illness that is not responsive to curative measures can receive palliative care, regardless of age, gender, class, culture, race and religion or belief system. Most people receiving palliative care have cancer, but some have progressive chronic neurological problems such as motor neurone disease or multiple sclerosis. Others have acquired immune deficiency syndrome (AIDS), Alzheimer’s disease or end-stage heart, lung or kidney failure. As the concept of palliative care is developing, more specialist palliative care teams are caring for people with illnesses other than cancer. Palliative care measures are also implemented for residents living in aged-care facilities who are in the last stages of life. Clinical Interest Box 43.2 provides an example of how palliative care may be implemented in the residential care environment.
CULTURAL DIFFERENCE IN PALLIATIVE CARE
Those providing palliative care in a multicultural society require sensitivity to difference in the way people from various cultures understand issues surrounding death and dying. For example, pain and suffering, and quality and meaning of life, may be interpreted quite differently cross-culturally and intra-culturally (D’Avanzo 2008; Kirkwood 1998). Sometimes judgments and care decisions are influenced by the nurse’s personal cultural values. It is important to avoid making assumptions about the client’s wishes by asking the client what is preferred in relation to all treatment, care and quality-of-life activities. For example, death is a taboo subject for many Muslims, therefore grief counselling is not well accepted and may be perceived as an invasion of privacy (Kirkwood 1998).
EXPERIENCES AND RESPONSES IN PALLIATIVE CARE
Palliative care affirms life and regards dying as a normal process. All care is therefore aimed at relieving pain and other symptoms. The client may have symptoms that relate to physical, emotional or spiritual concerns and may be desperately seeking help simultaneously on all of these fronts (Old & Swagerty 2007). Physical comfort is the first priority and essential if palliative care work is to be effective in the other areas (Keubler, Berry & Heidrich 2002). Many clients experience several different physical symptoms at the same time. Pain and weight loss are two of the most common symptoms, but not all people with terminal illness experience pain (Kaye 1998).
PAIN
Pain is the symptom most feared by people with a life-threatening illness. This fear is justified because two-thirds of clients with advanced cancer, for example, experience significant levels of pain (McCaffery & Ferrell 1997). However, modern pain management means that clients receiving good palliative care can and should remain virtually pain free throughout their illness (World Health Organization 2008). Nursing measures such as careful positioning and repositioning, and gentle exercise or support for painful body parts play an important role in providing relief from pain and physical discomfort.
Medication is the primary method of controlling pain and many other physical symptoms. Surgery, radiotherapy, nerve blocks (injection of anaesthetic agent close to a nerve to cause temporary or permanent blockage in transmission of pain) and chemotherapy may also be used to palliate pain and/or prolong life in some circumstances (Kaye 1998; Keubler, Berry & Heidrich 2002). However, the burden of chemotherapy treatment and the resulting side effects frequently mean that stopping chemotherapy in favour of other palliative treatment methods is a welcome relief to clients and families.
Special physiotherapy techniques such as ultrasound and laser therapy can also be helpful in managing pain. Complementary therapies, such as massage, aromatherapy and guided imagery, can also be very valuable and are often combined with medical and nursing care to enhance the effectiveness of pain-relief measures, to reduce anxiety and to improve sense of wellbeing (McCabe 2001).
Medication to control pain
Pain stems from a variety of sources, including bone, nerve root, viscera and soft tissue (Farrer 2002). For example, AIDS often results in the unsheathing of myelin fibres, causing nerve root pain, and pressure from a tumour on an organ capsule may cause visceral pain. Expert assessment of what is causing the pain affects the type of medication that will be most helpful. Most often a combination drug therapy is needed. Non-steroidal anti-inflammatory drugs, anticonvulsants and corticosteroids, in addition to analgesics, are some of the drugs used in combination therapy (Kaye 1998; Keubler, Berry & Heidrich 2002; Foyle &, Hostad 2007). The right combination of medications for each client depends on good communication between the client, family, medical and nursing staff and the expertise of the palliative care team. It is a core skill of the palliative care nurse to assess each aspect of pain and monitor it frequently. (Chapter 35 provides further information on the management of pain.)
Most pain can be controlled completely or kept at a level acceptable to the client (Kaye 1998; Keubler, Berry & Heidrich 2002; Foyle & Hostad 2007). Sometimes, for a variety of reasons, clients are reluctant to admit to the extent of their pain. People interpret their pain according to their life experiences, values and beliefs. Some people view the admission of pain as a sign of weakness, others prefer to deny it is there because increasing pain might mean the condition is getting worse. Some people are fearful of opiate drugs and may refuse to take morphine because they believe it is addictive or that it will not be effective later on when they need it most; others may believe that it will hurry their death. None of these things are true when morphine is taken to relieve pain and it is prescribed correctly. The nurse has an important role in developing a trusting relationship with the client and explaining the facts about morphine or other medications to allay fears.
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