Anorexia nervosa: Australian treatment guide for consumers and carers, 2005

Section 2: Living through anorexia nervosa

Page last updated: June 2005

Hospitalisation, access to treatment and emergency situations
The treatment plan
Where are treatments provided and what does it cost?
What qualifications do health professionals need to treat anorexia?
What if I can't get treatment where I live?
Some medical procedures common in monitoring progress
The role of hospitalisation
Do I have to go to hospital?
What about after hospital?
What do I need to know about treatment programs?
What medical complications and emergencies can happen?
What if I don't want treatment or refuse it when in a crisis?
Legal considerations for you
Legal considerations for family and carers
What about confidentiality?
Are there limits to confidentiality?
What are my rights then?

Hospitalisation, access to treatment and emergency situations

The experience of anorexia nervosa is different for everyone. Whether you are a consumer or a carer, living through anorexia nervosa may involve periods of medical or psychological crisis, periods of improvement, periods of relapse and loss of hope. Sometimes persisting with treatment can be difficult. This section provides advice for people who have been through this experience and covers aspects of treatment, emergency situations, looking after yourself, and information for carers.

The treatment plan

A 'treatment plan' is your road map to recovery. Treatment planning is about seeing the person with anorexia as an individual. It should be flexible for changing needs and circumstances. It may also include or inform your family or partner, especially in the case of adolescents and young people. Setbacks do occur and should be planned for.

Important aspects to consider are: where is treatment provided and, are the people qualified so the right result will be likely?

Treatment is not all about food - it is about you as a person and what is important to you.

It is OK to ask health professionals about their qualifications and experience in treating anorexia nervosa. Top of page

Where are treatments provided and what does it cost?

Because it is a long-term illness for many people, a range of settings is usually considered for treating anorexia. The cost will be a major factor:
  • Hospital in-patient treatments
  • Comprehensive day programs or other non-residential programs
  • Outpatient treatments
  • Outpatient support programs.
Treatments provided in the private sector can be extremely expensive even if you have private medical insurance. You can tell your doctor or mental health service if you are unable to afford these costs. Some public hospitals, community mental health services and doctors with special training in eating disorders may offer more affordable treatment.

What qualifications do health professionals need to treat anorexia?

When you are just diagnosed, it is important to seek treatment from health professionals who are experts in anorexia nervosa, as well as having appropriate qualifications and registration for their profession. Treatments can only help if applied with skill. Because of the physical consequences of the illness it is also a condition where a doctor must supervise the treatment to monitor your physical health. In most cases, a psychiatrist will have a role in directly overseeing all aspects of treatment or giving advice to those involved in your care. Top of page

What if I can't get treatment where I live?

If there is a waiting list, or if expert treatment for anorexia is not available in your area, or if you can't afford treatment being offered, you can ask for a referral to an alternative option. Country people regularly attend treatment centres in major capital cities. At other times, specialists from the city can work by phone to help local health professionals manage your care where you live. Your GP or mental health service should co-ordinate these services for you.

Some medical procedures common in monitoring progress

Reduced eating can damage the whole body - nutritional status is monitored regularly. This is done by a measure called the Body Mass Index (BMI). A BMI under 17.5 is one of the criteria for diagnosing anorexia nervosa. Measurement of body fat may also be done. You may be assessed for raised urea, which indicates dehydration.

Your blood biochemistry may be tested for things such as potassium levels in the blood. Electrolyte disturbances are especially common in people who vomit a lot and can lead to cardiac problems that may be fatal.

Heart failure is a serious potential complication in anorexia. An Echo Cardiogram (ECG), a test that checks your heart, may be required.

Bone density can be affected. Osteopenia (low bone density) leading to osteoporosis is a serious longer-term complication. It can result in stress fractures. Bone scans may therefore be needed.

Endocrine disturbances are often investigated and oestrogen is checked. Top of page

The role of hospitalisation

The primary purpose of hospitalisation is to provide safety when a person's life has been severely compromised by starvation. However, admission to hospital can have several roles in treating anorexia nervosa. Some hospitals have developed psychological programs that encourage the patient to learn new ways of coping other than through food programs. Sometimes hospitalisation is used to help the person settle into a psychological treatment routine. This includes learning to eat again and ensuring access to medical staff to manage any health consequences of starvation.

Do I have to go to hospital?

The majority of people with anorexia nervosa are treated outside of hospital, and hospitalisation is only one component of overall care. However, it is expensive. Yet, it can also be key to some people's recovery. To reduce costs and inconvenience, being treated without going into hospital is encouraged where possible. Day hospital programs are being used increasingly because they are less disruptive, cost less and can be equally effective.

Anorexia can be an illness of many years duration, but hospital treatment is usually offered on a short-term basis only. Top of page

What about after hospital?

Because most treatment will take place outside of a hospital, it is important that all aspects of treatment are carefully co-ordinated with communication between the hospital staff, the GP and your community treatment team. 'Discharge planning' is a term that refers to a meeting to organise post-hospital support to help you stick with your treatment plan. Carers may be invited to help at this stage and follow-up visits may be arranged in advance.

Managing mealtimes and routines will be a key part of your discharge plan as will scheduling follow-up counselling sessions.

What do I need to know about treatment programs?

People who have recovered from anorexia recommend you request an information package prior to or on admission to both inpatient (hospital) and outpatient (day treatment centres) services that includes the following: the treatment program/activities and its rationale; the treatment centre's ethos and philosophy, and the costs (including extras, hidden costs and rebates available).

It is also helpful to know the admissions procedure, for example:
  • explanations of the treatments and when they will be followed
  • any treatment alternatives available
  • the roles of the different health professionals
  • how the treatments work
  • rules and policies of the agency
  • information about legal orders if they apply to you and your rights. Top of page

What medical complications and emergencies can happen?

Both medical and psychiatric emergencies arise with anorexia nervosa and they can be life threatening. You don't have to have a chronic form of illness for a medical emergency to arise, because lack of food over a fairly short period of time can result in any number of serious health consequences very rapidly.

Extreme emaciation, serious electrolyte disturbances, cardiac irregularities and delirium (from a starved brain) require urgent treatment in a medical intensive care unit.

When you have anorexia nervosa you may indeed appear more resistant to viral illness than are healthy persons. However, your body can’t deal with severe bacterial infections, which must be treated without delay.

If you have anorexia nervosa, you do not necessarily display the illness characteristics you might expect for someone who is starving. Your exercise routines, for example, might change your body's reactions and responses. Others might assume that you feel very well due to your exercising, when in fact you may be on the verge of a medical emergency.

In medical emergencies, hospitalisation is very likely. In relation to treating malnutrition, overhasty refeeding, particularly with a high carbohydrate diet or a dextrose drip, can lead to the development of the 'refeeding syndrome', a physiological response. If this should happen out of hospital, it requires hospitalisation to correct. Top of page

What if I don't want treatment or refuse it when in a crisis?

Sometimes people with anorexia nervosa may find treatment and the consequences of the illness so stressful that they experience depression and suicidal feelings. Sometimes they refuse treatment and this can be life threatening. Crisis situations include:
  • Refusal of medical treatment that is life saving
  • Refusal of psychological treatment that may be life saving
  • An immediate risk of suicide or self-harm.
Hospitalisation is also indicated in these situations. Health professionals are required by law to ensure that you are safe, which is called having a 'duty of care'. For example, they may hospitalise you against your will under the Mental Health Act, or involve a next of kin in a crisis to help ensure that you are physically safe. They should explain to you their 'duty of care', your rights and those of your family in these situations. The goal should be to arrange the most safe, but agreeable arrangement and take into account your preferences wherever possible.

Legal considerations for you

More detailed legal information is contained in mental health legislation and guardianship legislation in your area. It is best to prevent any crisis occurring that diminishes your control over making your own health care decisions. Some consumers like the idea of a written agreement in the form of an Advance Care Directive. This agreement is reached between you and the health professional and would spell out what steps should be followed in a crisis situation. It is like an insurance policy - a plan in case your physical or mental health deteriorates at some future time. This approach is sometimes taken for managing other recurring or chronic physical illnesses. Top of page

Legal considerations for family and carers

When a person with anorexia nervosa refuses treatment, carers may obtain a 'legal order' under guardianship legislation that permits them to take temporary control over the patient's care and make decisions on their behalf to authorise medical or psychiatric treatments. This is a last resort option only for the purpose of saving a life.

The law is different in every jurisdiction and more information is available about this on the websites of Eating Disorder Associations and Foundations (see Appendix 4).

What about confidentiality?

In Australia you can seek a confidential medical consultation at age 14. Health information you agree to share with your family or carer can be shared by the health professional. If you are below the legal age, parents will usually be included in all discussions about your health and welfare. However, it is recommended that health professionals, you, and where possible, those you nominate to be involved, work together jointly to speed recovery.

No matter what your age, health professionals can share some general information with your immediate family without breaching your confidentiality. Examples are:
  • General information on the illness and common complications
  • Advice to help them give you support
  • Discuss in general terms, common risks for people during treatment.
However, the exact medical facts in your case remain your private health information and what you discuss about your feelings and details of any psychological therapy remains private between you and your mental health professional. Top of page

Are there limits to confidentiality?

Yes, there are limits to confidentiality. What your worker discloses in a crisis situation will depend on your age and circumstances but may include:
  • Informing someone else (another professional or your next of kin) if there is a medical crisis
  • Notifying others if you express imminent risk of suicide intent or plans and discuss with them how they might help.
What the health professional discloses to your family or partner will depend on your age, and the level of contact your family has with you and other issues concerning your preferences, circumstances and safety considerations.

What are my rights then?

You have both rights and responsibilities in treatment. For example, your rights include:
  • A right to confidentiality wherever possible, including knowing what is told to others and when and why
  • A right to make decisions about your treatment and to offer suggestions as to what you think might work in your case and to have your preferences respected
  • Being treated with respect and dignity
  • Having your age taken into account and being treated accordingly
  • Being treated in a way that respects your growing knowledge of your health over time
  • A right to decline and refuse treatment in non-life threatening situations
  • A right to complain if you are unhappy about your care.