Terminal Phase

Definition

Assessment

Explanation to patient and family

Correct reversible factors

Consider appropriate options

Institute non-pharmacological interventions

Prescribe appropriate first-line treatment

Consider adjuvant/second-line treatment

Review assessment and management

Involvement of interdisciplinary team

Resuscitation 

Definition 

The terminal phase occurs when inevitable and irreversible decline in normal function sets in just prior to death. It may come on gradually or it may happen suddenly and unexpectedly. Death usually occurs within 48 hours. 

Assessment  

Clinical features include: 

• being bed-bound
• cyanosis
• irregular or noisy breathing
• delirium and increasing drowsiness
• reluctance to eat or drink
• oliguria 
• hypotension 

While there may sometimes be a degree of clinical uncertainty, it is usually possible to “diagnose dying”. Diagnosing dying is important to do as it greatly assists in proper care planning by shifting the focus to preparing for the end. 

Explanation to patient and family 

Each family has its own internal dynamic and pattern of communication. A meeting with the family gives the hospice staff an opportunity to help everyone understand the situation. By showing sensitivity and flexibility it is usually possible to get everyone to focus on “comfort” as the main goal of care. All future care options can then be weighed up against this goal. It is important that families understand that the decision must be based on what the dying person would have chosen if it was possible for them to talk. 

Correct reversible factors 

When an unexpected deterioration occurs, first consider if it could be due to side effects of the patient’s current medication. Other possibilities include dehydration, metabolic disturbances or infection. 

Important: A full bladder and an impacted rectum can contribute to restlessness. 

Consider appropriate options 

While stopping medication may be easy, correcting complex abnormalities or treating hypostatic pneumonia is usually not appropriate. By clarifying the main goal of care, one can usually reach consensus about the most appropriate course of action. 

Institute non-pharmacological interventions 

• The immediate family should be allowed “free” access to visiting. Most other visitors should be restricted, apart from persons involved in pastoral care. 
• Mouth and pressure care are continued. 
• Food and fluids may be offered but should not be forced. 
• Intravenous fluids and indwelling catheters are usually not necessary. 
• Occasionally, in the pre-terminal phase when there is repeated vomiting, parenteral fluids via a subcutaneous infusion (hypodermoclysis) may be considered. One, to one and a half litres of normal saline can be run in over a 12 hour period by means of a subcutaneous butterfly needle. Any suitable site can be used. Commonly the thigh, abdomen, upper chest or suprascapular area are used. If run in during the night, it can be discontinued during the day so that the patient can be more mobile during the day. 

“In the terminal phase of progressive illness there is virtually always a profound loss of appetite (and therefore an absence of hunger). The literature is clear that the body cannot use calories to become stronger or to gain weight. Instead, it breaks down its own energy stores (muscle, fat, carbohydrates) regardless of caloric intake. Efforts to improve caloric intake by enteral or parenteral means have no role in addressing comfort, functional status, or survival in such end-of-life scenarios”. (Harlos M, 2010) 

• Routine checking of vital signs may be discontinued. 
• Laboratory investigations and monitoring oxygen levels are not required. 
• Psychosocial support by palliative care professionals facilitates the patient and family’s expression of emotional pain, fear or anger; assists in the containment of these emotions and allows end of life tasks to be completed. It has been described that there are important messages that need to be conveyed at the end of life. These are: 
  • Forgive me 
  • I forgive you
  • Thank you
  • I love you
  • Goodbye

Prescribe appropriate first-line treatment 

• Adequate analgesia must be continued. If the patient can no longer swallow, switch to a syringe driver, regular intermittent subcutaneous injections or a trans-dermal fentanyl patch. Special care needs to be taken when changing drugs and the dosages need to be frequently re-evaluated. 
• When a patient remains distressed (pain, dyspnoea or agitation), the appropriate drug (an opioid or sedative) needs to be given and repeated until the patient is comfortable. The time between doses should be guided by the route of administration. The IV route should be effective within 10 minutes, while the effect of a drug given sublingually or by subcutaneous injection may take up to 30 minutes. If there is no improvement by that time, the drug needs to be repeated until the desired response is obtained. This must be regarded as an emergency and be handled as such. 
• Sedation is essential if the patient is agitated and restless. Not only is this distressing to everyone, including the patient, but the patient and the nursing staff may be injured if the patient becomes aggressive. It is an essential duty of the doctor to provide adequate sedation in such situations. There needs to be zero tolerance of the inadequate management of agitation. Important: Physical restraints should never be used. 
• Continuous sedation may be indicated for refractory symptoms. This is a complex topic that needs careful consideration. Consult an experienced palliative care physician for advice. 
• Drugs that may be used for sedation: 

Alternative drugs that may be used if the above are not available: 

Step 1: Lorazepam 1-4 mg sublingually, repeated every 30 minutes till effective, then repeated 4 hourly.  

• or Diazepam 10 mg – may be given rectally (using a syringe without the needle), repeat every hour till effective, then 40-60 mg per 24 hours. 
• or Clonazepam 1-2.5 mg sublingually, repeated every 30 minutes till effective, then repeated 6 hourly. 

Step 2: Chlorpromazine 12,5 mg iv/im, followed by 25-100 mg 12 hourly per rectum. 

• Most other drugs can be discontinued. 

Consider adjuvant/second-line treatment 

Noisy breathing may be distressing to the watching family. It occurs when dying patients are no longer able to cough or are aware of the need to. Secretions collecting in the upper airways result in the rattling sound. This process must be explained to the family. 

Suctioning is not effective and should not be tried as it causes more secretions to accumulate. 

It may help to reposition the patient – head up or down at about 30º. 

Drugs such as hyoscine butylbromide 20-40 mg sci or glycopyrrolate 0.2-0.4 mg sci 4 hourly may be tried, but are seldom very effective unless started as soon as possible after the onset of noisy breathing. 

Review assessment and management 

The patient’s condition and medication must be carefully reviewed on a regular basis. Families need to be informed of any changes and their concerns should be adequately addressed. Helping families along what been aptly described as “the path of least regret” greatly eases their current pain and their future grief. 

Involvement of interdisciplinary team 

Good care for dying patients requires adequate time and staff. This is only possible if everyone, including the family, participate appropriately. It is imperative that the senior staff members ensure that the whole team functions effectively. When the dying process is prolonged, special care needs to be taken that there is effective communication and support for all involved. 

Resuscitation 

During the terminal phase, CPR is inappropriate. It will not restore cardio-pulmonary function for any significant period of time. It merely prolongs the dying process and is distressing for the family. discussion of a person's preferences for care and an advance healthcare planning document early in the illness (or when a person is well) will elicit preferences for interventions such as CPR and facilitate the understanding that CPR is a non-beneficial treatment during the terminal phase.