The difference between end of life and palliative care

Victoria’s end of life and palliative care framework defines end of life as the 12 months before death; however, end of life may be shorter or longer.

Palliative care is care that is tailored to help with the effects of life-limiting illnesses. While patients with life-limiting illness usually have greater need of palliative care in their last 12 months of life, palliative care is not limited to a person's last 12 months.

Provision of palliative care is based on people’s needs, rather than diagnosis or prognosis, and can be provided at the same time as treatment to slow down or resolve life-threatening conditions. 

Watch the video: Palliative care from diagnosis to death

Screenshot from palliative care video

Recognising the last 12 months of life

Identifying what stage of illness people are at will determine what clinicians need to consider. This becomes urgent when the patient is close to dying and wants to be at home.

The patient may:

  • be at risk of dying within the next 12 months
  • be likely to die within the next weeks to months
  • be dying within days and wanting to go home.

Diagnosing dying is relatively straightforward in the last few days or hours of life, but diagnosing dying several months or weeks before death is more complex and uncertain. This is especially so in non-malignant conditions like cardiac and respiratory disease.

Not recognising dying, especially in chronically ill older patients, delays acknowledgement of the limitations of treatment, appropriate decision making and the planning of comfort care. This leads to intensive treatments to prolong life, and to resuscitation attempts, which can cause additional harm.1 It may also be contrary to people’s values and goals around end of life.

Ask yourself the ‘surprise’ question - ‘Would I be surprised if this person died in the next few months, weeks or days?’

A thorough assessment is important. Enlist relevant specialties, including palliative care, to help assess the patient. Other specialties bring insights that might otherwise be missed. 

The following are examples of guides to identifying people at risk of deteriorating and dying.

Supportive and Palliative Care Indicators Tool (SPICT)

Gold Standards Prognostic Indicator Guidance

Prognosis and processes of care for discharge home

Prognosis  Twelve months  Weeks to months  Imminent 
 Characteristics
  • Prognosis - uncertain 
  • At risk of dying in 12 months
  • Diagnosis/progression of life-limiting illness
  • Admissions to hospital but return to adequate function
  • Prognosis ~ 12 months 
  • Increasing admissions to hospital
  • Increasing symptoms
  • Reducing performance status
  • Prognosis - hours to days

 

 Processes

Recognise and acknowledge clinical and prognostic uncertainty

  • Goals of care*
  • Advance care planning||

 

 

Two groups:

1. Acute deterioration may be reversible

2. Deterioration likely to be irreversible

  • Use a tool to guide prognostication, such as SPICT
  • Consider critical events
  • Revisit goals of care
  • Resuscitation: response depends on the situation and advance care plan
  • Limitations of medical treatment (resuscitation plan)# are reviewed and in place
 

Recognise and acknowledge dying

 

  • Use a tool to guide prognostication, such as SPICT

  • Operationalise advance care plan
  • Limitations of medical treatment (resuscitation plan) are reviewed and in place
 Care approach
  • Palliative approach
  • Specialist palliative care consultation for complexity
  • Palliative approach
  • Measured life-prolonging and stabilising treatments
  • Specialist palliative care for complexity
  • Care coordination – community supports

 

  • Comfort, quality of life and dignity
  • Specialist palliative care
  • Care coordination - specialist palliative care community supports

* Goals of care guide medical treatment.

|| Advance care planning documents the patient's wishes for future health and personal care should they lose the capacity to make or communicate their own. decisions

# Limitations of medical treatment (resuscitation plan) documents the response required in the event of a cardiac arrest or other acute clinical deterioration.

Dealing with uncertainty

Uncertainty about the patient’s prognosis and likely trajectory is common where there is advancing illness and evolving priorities.

Address the patient’s needs as they arise, and sensitively acknowledge the potential for unexpected deterioration or stabilisation.

Patients and carers are sometimes relieved to have a boundary put around the time they will have to manage. If a patient or carer asks ‘how long’, it can be helpful to respond in terms of ‘months rather than years’, ‘weeks rather than months’ or ‘days rather than weeks’.

Decision making

Patients appreciate timely, honest and culturally sensitive conversations, particularly around prognosis, treatment options and what matters to them.

Some patients, however, are too sick, feel too vulnerable or would prefer someone else to have the conversation and make decisions for them. They may rely on their substitute decision maker, family or a health professional to do this.

Find out on admission or as soon as possible:

  • if the patient has a medical treatment decision maker
  • if the patient has an advance care plan
  • if a carer or family is available
  • how much the patient would like to be involved in decision making.

Cues for initiating a discussion about goals of care with the patient, or carer, or both, can occur:

  • on admission
  • if discharge is expected
  • when they express concern about the future
  • when they express preferences to receive care or die in a particular location
  • if the patient has no family or carer
  • if the patient has a complex family structure or situation.2

The plurality of views and values concerning dying and death in our multicultural society calls for careful inquiry. You may need to consider the following:

  • sanctity-of-life versus quality of life - quality of life is important to many, while others perceive a moral or religious duty to accept all life-prolonging treatment
  • individual autonomy, where the individual decides what is best for themselves, versus family or community decision making about what is best for the patient
  • protecting the person from bad news versus informing them
  • honouring the wishes of the individual over those of the family or group.3

Advance care planning can help to identify people’s views and provide a person-centred approach.

Person-centred care does not necessarily mean accepting and supporting all decisions a patient makes. Use your clinical assessment and judgement when sensitively discussing the implications of decisions that would have clearly adverse outcomes. For example, a patient who is expected to die soon expresses a clear wish for cardiopulmonary resuscitation; however, CPR is unlikely to restore a heartbeat in someone close to the terminal phase, would not be of benefit and may do harm by denying the patient a gentle dying.4

Remember, you bring clinical expertise, while the patient is the expert on what matters to them. This is an opportunity to discuss their goals of care. Seek help from the palliative care consultancy service for these challenging conversations.

Palliative care consultancy services

Palliative care consultancy services advise and support treating teams in hospitals and the community. They also provide direct clinical consultancy and advice for patients and carers with complex needs. They have skills and expertise in:

  • difficult symptom management
  • working with emotional distress and psycho-social issues
  • establishing goals of care in the presence of conflicting family wishes
  • helping patients achieve quality of life.

People with a life-limiting illness other than cancer - for example, dementia - often have the same needs as those with cancer. Need is the driver for palliative care, not diagnosis or stage of disease. Palliative care consultancy in tandem with active treatment can be beneficial for the patient and family.

Metropolitan hospital-based services

All metropolitan health services have a palliative care consultancy service (except for Royal Victorian Eye and Ear Hospital and The Royal Women's Hospital). Hospital-based palliative care consultancy services usually don't play an active role once the patient is discharged

Services in rural regions

There is a palliative care consultancy service in each rural region providing specialist consultation for hospitals, residential aged care, disability services, general practitioners and other community-based services.  

Liaise with the local palliative care consultancy service if you are sending someone home to the country and the patient’s needs are complex or likely to become complex.

Contact details of palliative care services

Refer to Therapeutic guidelines palliative care 2016 version 4 on the Clinicians Health Channel at your health service.

Footnotes

1 Cardona-Morrell, M. & Hillman, K. Development of a tool for defining and identifying the dying patient in hospital: criteria for screening and triaging to appropriate alternative care (CriSTAL). Accessed at http://spcare.bmj.com/content/early/2014/12/09/bmjspcare-2014-000770.full, October 2016.

2 Hayes B 2014, Quality communication: ‘the art of communication’.

3 Hayes B and Zen S 2016, The trouble with ….. adopting outside models! accessed at http://www.healthissuescentre.org.au/images/uploads/resources/HIC-may-2016-forum-hayes-zen-acp-lessons.pdf, December 2016.

4 Hayes B 2013, Clinical model for ethical cardiopulmonary resuscitation decision-making, Internal Medicine Journal, accessed at http://onlinelibrary.wiley.com/doi/10.1111/j.1445-5994.2012.02841.x/full, February 2017.