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Learning modules

Activity 1: Life-limiting illnesses

Who is palliative care for?

In Module 1, you learnt that the need for palliative care is not dependent on a specific medical diagnosis, but is applicable to people who have a wide range of progressive and advanced life-limiting illnesses.

The term life-limiting illness is used to describe illnesses where it is expected that death will be a direct consequence of the specified illness. Such illnesses may include, but are not limited to:

  • cancer
  • heart disease
  • chronic obstructive pulmonary disease
  • dementia
  • heart failure
  • neurodegenerative disease
  • chronic liver disease
  • renal disease.

The palliative approach will also be applicable when caring for frail older people.

Understanding care needs

The needs of people facing life-limiting conditions will vary. Some factors to consider include:

  • the nature and level of the person's health and support needs. A holistic approach is recommended where all needs, not only physical needs, are considered
  • an individual's strengths and resources for example, social support and coping skills
  • an individual's preferences and choices. [1]

The key focus of this module is to understand specific health needs that are likely to be associated with different life-limiting illnesses. This will help you to develop a plan of care that is centred around the individual's care needs.

Illness trajectories

Different life-limiting conditions are associated with different patterns of illness. These patterns, referred to as illness trajectories, indicate the path of a person's experience.

Most life-limiting illnesses, with specific illness trajectories, can follow several possible clinical courses. Often the course is not a series of well-marked events.

For example, following a cancer diagnosis, the goal of treatment for many patients will be curative initially and involve an active treatment plan. For others, their initial diagnosis may indicate advanced disease and the focus may immediately be on controlling progression of the disease and palliative care. Some patients may have a recurrence or progression of their cancer, indicating that it's necessary to reorient from curative to palliative goals of care.

The course of each person's disease and the nature of his or her experience can be influenced by a range of factors. This makes prediction and prognosis a complex process.

Some of the factors influencing the clinical course of a disease include:

  • the natural history of the disease itself for example, people with cancer can often remain well and function reasonably for prolonged periods, but experience a sudden decline before death
  • presence and nature of co-morbidities for example, people with some chronic diseases may not be able to tolerate some active treatments
  • treatment goals and decisions
  • access to health services.

It's important to understand the possible clinical course and common experiences for individuals at various points in their illnesses trajectory. This is because:

  • throughout the course of a person's illness trajectory, you'll be required to identify interventions appropriate for his or her needs over time
  • people diagnosed with life-limiting illnesses often have questions about what's likely to happen to them over the course of their illness. This kind of question needs a clear and honest response from you.

Patterns of change

While each person with a life-limiting illness experiences his or her illness differently, it's possible sometimes to identify patterns of change in the status of his or her health and care needs.

Doing this helps you plan interventions and provide support and information appropriate to each person and his or her family.

The following diagram [2] shows three typical illness trajectories for patients with progressive chronic illness: cancer, organ failure, and the frail elderly or dementia trajectory. It’s important for health professionals to be aware of these trajectories to help them anticipate the individual, multidimensional needs of patients and caregivers and respond appropriately.

Some description

THE FOLLOWING CASE STUDIES ARE TYPICAL EXAMPLES OF EACH OF THE ILLNESS TRAJECTORIES.

Case A - Mostly cancer
A 45 year old woman with breast cancer. Initial diagnosis 10 years ago. Diagnosed with secondary breast cancer 4 years ago and continued to receive a range of anti-cancer treatments. Recently diagnosed with new metastases to the bone and liver. She is suffering from weight loss, loss of appetite and pain. She is increasingly weak and tired. Her condition has been stable for some time, but is likely to deteriorate rapidly.

Case B – Mostly lung and heart failure
A 69 year old man with end-stage heart failure who is experiencing fatigue and increasing shortness of breath on exertion. He has had 3 emergency hospital admissions in the past 12 months. He is concerned about what quality his future holds and when he will die.

Case C – Mostly fraility and dementia
An 85 year old man with COAD, osteoarthritis, early stage dementia. He is living alone, but his family is becoming increasingly concerned for his safety. He is very forgetful and his mobility is poor. He is a high falls risk and his decline is likely to be slow, making it difficult to predict the dying phase.

Some key points about illness trajectories

  • Each phase of an illness trajectory can bring its own particular meanings and challenges for the person with a life-limiting illness. For example, treatment goals for someone with a life-limiting illness, where he or she undergoes a slow functional decline, might focus on maximising function and quality of life.
  • Knowledge of the likely course of a disease helps predict the illness trajectory and when the condition may, or may not be entering the end phase. For example, a curative treatment for a co-morbid condition may be warranted for a person with a slowly progressive cancer causing limited functional decline.
  • Understanding the likely course of a disease can help guide clinical assessment and choice of treatment options. For example, it may appear unnecessary to treat aggressively someone with end-stage heart failure who may have pulmonary oedema. However, if it helps the person function and fits in with his or her treatment goals, then such treatment may be appropriate.
  • The end-phase of life may become apparent when particular changes in the status of a person's functions or symptom profile occurs. This phase may initiate changes in supportive interventions for the person and their family.

Summary of symptoms present as death becomes imminent

Thinking points


REFERENCES

1. Palliative Care Australia. (2005).Standards for Providing Quality Palliative Care for all Australians. Canberra: Palliative Care Australia. Retrieved September 15, 2010, from http://palliativecare.org.au/national-standards-assessment-program/

2. Lynn, J., Adamson, D.M. (2003). Living well at the end of life: adapting health care to serious chronic illness in old age. Rand Health White Paper WP 137. California: Rand Corporation.  Retrieved September 15, 2010, from http://www.rand.org/pubs/white_papers/WP137.html. Reproduced with permission.