4.7.2 Counselling on palliative care

As discussed in Chapter 6, assessment and relief of psychological, social and spiritual distress of patients and family caregivers are critical parts of palliative care for people affected by TB.

When patients learn that they are likely to die from their illness, they may experience any or all of the following emotions or thoughts in no particular order (56, 57):

  • Denial: inability to believe, understand or accept the terminal prognosis.
  • Anger: blaming others or God for the situation.
  • Bargaining: desperately searching for a way out of the terminal situation.
  • Depression: feelings of despair, worthlessness, guilt or shame.
  • Acceptance: finding peace.

In addition to the counselling techniques already described – providing basic psychological support (section 4.5.1), strengthening social supports (section 4.5.2), problem-solving (section 4.5.3), supporting the family/caregivers (section 4.5.4) – health-care providers can do the following (57):

  1. Allow the patient to express strong emotions such as sadness, tearfulness or anger without interrupting or judging.
  2. Express the wish that there were some means to treat the illness.
  3. Assure patients that they will continue to be cared for, that they will be accompanied throughout the illness and that any discomforts will be treated.
  4. Ask whether the patient would like spiritual support and arrange for an appropriately trained spiritual supporter if requested by the patient.
  5. Assess the patient for symptoms of anxiety or depression. If these symptoms are in excess of what would normally be expected in this situation, consider treating. Refer for mental health services only if such services are easily and quickly accessible by the patient.
  6. Prior to the patient’s death, assess family members for bereavement risk (e.g. history of mental illness, difficult and emotionally charged relationship with the patient) (58).
  7. Make bereavement support available to the family via the palliative care team, a communitybased bereavement support group, or a social worker (59).
  8. In the course of bereavement support, watch for signs and symptoms of prolonged grief disorder (e.g. more than 12 months of difficulty in accepting the death and clinically significant impairment in social or occupational functioning). Refer to a mental health specialist if suspected (58).
  9. Implement resilience-promoting programs within palliative care or DR-TB teams such as regular sharing of difficult cases, memorial ceremonies for deceased patients, regular social activities.

Provide information and education to patients, as follows:

  1. Educate the patient about common reactions to disability or terminal conditions. The following statements are some examples:    People in similar situations may react in different ways. Some people show strong emotions while others do not. It is alright to feel sad and even cry; it does not mean you are weak. People who do not cry may feel the emotional pain just as deeply as others but have different ways of expressing it. There are no right or wrong feelings. Sometimes you might feel very sad, and at other times you might feel better.
  2. People who suffer from debilitating complications after treatment may also experience adverse psychosocial and financial impacts. It is extremely important to monitor their adjustment to compromised health status; it may take up to six months before they are able to recover their emotional health completely. During this period, other forms of social and occupational support can be of tremendous help
  3. Health-care providers also need to be mindful of patients’ cultural and religious beliefs. Spiritual distress and existential concerns should be treated with the same level of priority as psychosocial distress and physical pain. Support may involve a spiritual caregiver.
  4. If a person presents with severe symptoms of distress, or is unable to sleep or eat, or there are signs of mental disorders (e.g. substance use disorders or depressive disorders) he/she should be referred to mental health services.
  5. Patients and family members often need emotional support to face the losses associated with disability, dying and bereavement. In cases where a patient dies, the family may need to be supported through the bereavement periods. Some bereaved family members may develop complicated grief requiring specialist treatment. Community support can also be mobilized to sustain bereaved family members.
  6. Providing support to people facing disability or death can be extremely distressing for healthcare providers themselves. They also need to be supervised and supported within their teams. National TB programmes should encourage self-care and staff support strategies, such as regular sharing of difficult cases, memorial ceremonies for patients who have died, regular social activities for palliative care team members, regular exercise and other supports.

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