Te Matehaere me te Pāpōuri / Dying and Grief

The last days or hours

Recognising end-of-life may seem relatively easy or obvious but in practice the ‘diagnosis of dying’ may be challenging for individuals or teams. Signs may include

• the patient becoming increasingly weak, sleepy, disinterested in getting out of bed, seeing anyone other than close whānau-family, less interested in surroundings, confused or agitated
• symptoms becoming more apparent and physical changes suggesting the body closing down becoming more noticeable (skin colour changes, skin temperature changes, slowing of respiration or Cheyne-Stokes respiration, involuntary twitching or moaning)

Management

• planning for the death is important
• if in an institution ensure that advance care plans indicate that the person is not for resuscitation
• ensure cultural or religious wishes are known and followed
• ensure that the patient and whānau-family are aware of the progression of disease and let them know what you expect to happen
• much anxiety near the end-of-life is engendered by a fear of the unknown so provide information about those things that are known to mitigate feelings of uncertainty
• anticipate what might happen rather than wait for a crisis
• anticipatory prescribing is considered to be best practice – analgesics, antiemetics, anxiolytics and antisecretory drugs should all be considered remembering that the oral route will probably be lost so use the subcut route

Common symptoms

Pain (see Pain section)

• opioids are the predominant analgesics used
• if the oral route is not feasible then consider
  • fentanyl patches – not suitable for unstable pain but may be useful as an alternative to oral analgesic
  • subcut boluses prn or continuous infusion
  • conversion from oral to subcut is 2:1 for morphine and oxycodone i.e. 10 mg oral = 5 mg subcut

Nausea/vomiting (see Nausea/Vomiting section)

• not usually a great problem unless there is intestinal obstruction or it has previously not been controlled

Agitation/distress/anxiety (see Fear and Anxiety, and Delirium sections)

Non-pharmacological management

• if there are fears/worries/tensions/spiritual issues consider what has helped in the past
• consider and address constipation/urinary retention/pain

Oral/buccal drugs

• lorazepam tablets 0.5 to 1 mg bd
• clonazepam drops (2.5 mg/mL – 0.1 mg per drop)
• midazolam sublingually or buccally (between gum and cheek)

Subcutaneous drugs

• midazolam 10 mg over 24 hours is a usual starting dose if not on benzodiazepine previously
• clonazepam boluses may be useful

Confusion (see Delirium section)

Non-pharmacological management

• look for reversible causes
• aim for minimal disruption and have familiar people in the room

Oral drugs

• haloperidol drops (2 mg/mL – 0.1 mg per drop), initiate at 1 to 2 mg prn and titrate to response (much higher doses may be required – see Haloperidol in Section 2)
• in frail or elderly patients an initial dose of 0.5 to 1 mg prn may be sufficient

Subcutaneous drugs

• haloperidol by continuous infusion 1 to 3 mg over 24 hours
• boluses of 1 to 2 mg may also be used
• if more sedation is required, use levomepromazine (10 to 25 mg in CSCI/24 hours with 5 mg prn Q3HR) instead of halperidol

Excess secretions (see Excessive (retained) Secretions section)

Non-pharmacological management

• consider position change
• it may be distressing to the whānau-family and carers rather than the patient

Drugs

• to be most effective, drugs need to be introduced early before excessive secretions build up
• glycopyrrolate 0.6 to 1.2 mg subcut over 24 hours as a starting dose may help (may increase to 2.4 mg)
• hyoscine (Scopaderm™) patch may be applied behind the ear although confusion and other anticholinergic side effects may occur
• hyoscine butylbromide may be useful 20 mg subcut followed by 30 to 60 mg by continuous subcutaneous infusion over 24 hours
• secretions may become thickened and plugs may form

After death review

It can be helpful for teams to review what happened in order to learn from each patient and whānau-family.

• what things went well? What lessons have been learned that can be carried to the next person and whānau-family?
• did the patient and whānau-family resolve all unfinished business?
• were all opportunities to say goodbye taken?
• was death peaceful and dignified?
• was everything possible done to care for the whānau-family and friends?
• how could care have been improved?
• how does each of the team of professional carers feel?

Grief and loss

Grief is the distressing emotional response initiated by the death of a loved and attached person, or a loss. It is a normal, adjustment process. Spontaneous recovery occurs over time for the majority.

• grief begins at loss/diagnosis
• there are no specific stages of grief. Grief is never fully resolved
• modern society is death-denying and death-defying
• symptoms include sadness, anger, waves of distress, tearfulness, initial insomnia, pining, haunting reminiscences, fleeting auditory or visual pseudo-hallucinations or a sense of presence of the departed
• mourning is the behavioural responses of grieving. Culture and social norms are determinants. Mourning customs serve to organise, protect and support the grief-stricken
• grief is age-influenced. Children do not develop the capacity to appreciate the permanency of death until aged 9 to 10. In the elderly grief may be curtailed if the death is expected
• grief counselling is age appropriate, person centred and supports a person of any age to adjust to the many changes at their own pace in their own timing
• grief counselling and therapy should be provided by qualified and experienced practitioners

Grief and loss in dementia

Dementia has been characterised as ‘the long goodbye’. Due to personality changes and a decline in the ability of a person with dementia to recognise even close relatives, whānau-family members can feel as though they lost the person long before the time of their death, perhaps due to the person being perceived as physically present but psychologically absent for some years prior to death. Feelings of ambivalence and guilt are common, and the grief of a close relative of someone with dementia can occur in a vacuum of social isolation if the wider social circle of an affected whānau-family member has drifted away during their loved one’s decline.

Relatives may become affected by a phenomenon known as disenfranchised grief, where their grief is not validated by others in circumstances where their relationship with the departed is not recognised and their loss unacknowledged. In a similar vein, stigma against those with dementia may lead to a disenfranchised or devalued death, where the value of the departed’s very personhood is no longer acknowledged by others who might otherwise lend support.

Depression rates in whānau-family caregivers of people with dementia can be as high as 50%. The grief of dementia caregivers frequently goes unrecognised by attending health professionals.

Complicated grief

• intense and/or protracted (> 1 to 2 years)
• it is characterised by prolonged longing and yearning for the deceased, intrusive thoughts or images, anger, guilt, emotional numbness, avoidance of reminders and difficulties redefinition
• it occurs in 10 to 15% of bereaved people
• it is accompanied by increased psychological and physical morbidity, substance abuse and suicide
• risk factors include sudden, unexpected, traumatic death, pre-existing dependant or ambivalent relationship, psychological/psychiatric vulnerability, disenfranchised grief (the hidden grief of those socially unable to express their response), compounded by major depression or substance abuse

Management of grief

• ‘death talk’ (anticipatory grief) and advance care planning may mitigate/moderate grief
• early identification of those at high risk for bereavement follow-up
• support, empathy, normalisation, offer pragmatic information/education
• encouraging adaptation and restructuring of a world without the lost one, acknowledgement of the emotional impact
• short term mild hypnotic medication if marked insomnia
• specific counselling e.g. Cognitive Behavioural Therapy if complicated grief, perhaps with antidepressant medication
• cathartic expression of distress is of minimal, if any, benefit