The Final Days of Life

There are five national priorities for the care of a dying patient: recognition, communication, involvement in decision making, support the needs of both the person dying and those that care for them, and individualised plans of care.

Recognition

When a patient with a life-limiting illness begins to deteriorate with no obvious reversible cause, it is likely that they are entering the dying phase if they are:

• Becoming progressively weaker, bed-bound
• Drowsy for much of the day
• Having difficulty swallowing
• Losing interest in food and drink
• Becoming confused or losing concentration

Assessing the Karnofsky score and specifically the phase of illness may help to highlight those patients who are entering the terminal phase. It is also a clear method of communicating the clinical situation to other healthcare professionals and teams involved in care.

1. Able to carry on normal activity; no special care needed.
2. Normal, no complaints
3. Able to carry out normal activity; minor signs or symptoms of disease
4. Normal activity with effort; some signs or symptoms of disease
5. Cares for self but unable to carry out normal activity or work
6. Requires occasional assistance but able to maintain most personal needs
7. Requires considerable assistance and medical care
8. Unable to care for self; Requires institutional care; diseases progressing rapidly
9. Disabled requiring special care and assistance; in bed >50% of the time
10. Severely disabled; hospital treatment; almost completely bedfast
11. Requires hospital treatment, specialist final-days care; bedbound; full care
12. Moribund; death imminent; often comatose or rarely rousable
13. Dead

Oxford Textbook of Palliative Medicine, Oxford University Press. 1993;109.

Communication

• Must occur both with the patient, if they have capacity to take part in the conversation, and those that care for them
• If not involving patient in end-of-life discussions and decisions, a reason must be clearly documented
• Mental capacity to be involved in these discussions must be recorded
• Explain that the above signs suggest the person is dying, but that predicting death is difficult
• Review clinical interventions, and explain reasons why these may change/discontinue including medical treatments, nutrition, and hydration
• Maintain interprofessional communication with explicit reference to the fact that a patient is expected to die

Involvement in decision making

• All decisions should be made collaboratively between clinician and patient, and those that care for a patient if they wish them to be included
• If not including patients in the planning and decision making due to lack of capacity or patient wish this must be clearly assessed and documented
• If available refer to an advance care plan, including DNACPR/ReSPECT forms 
• Discuss and plan for preferred place of care and death
• Bear in mind that a person is allowed to change their mind and be open minded in this

Support patient needs

• Ensure practical support is explored and offered for all those involved
• If the patient is currently in an acute hospital setting explore whether the fast track CHC funding process may facilitate discharge to preferred place of care
• Emotional support for patients and those that care for them may be offered by multiple members of the interprofessional team
• Spiritual and cultural needs should be explored 

“Plan and Do” using individualised plan of care (IPOC)

• Be familiar with the care plans in use in your area, which are often for those in their final 2-3 days of life with a Karnofsky score of 10%
• Use the documentation processes of these care plans to guide conversation and to communicate decisions
• Consider nutrition and hydration; is oral intake safe, practical, and likely to promote comfort? Document a plan and explain to carers why intake may be reduced and whether this is acceptable.
• Plan mouthcare, continence care, and skin care
• Document plans for symptom control and medication rationalisation
• Which clinical interventions will cease, and which will continue
• Document preferred places of care and dying and important contacts
• Anticipate and plan for specific complications e.g. massive haemorrhage 
• Regularly reassess, as things do change and sometimes patients improve and reinstating some active treatments may become appropriate