What you need to know.
PLANNING AHEAD
What would happen if you became very sick or had a serious accident and could not talk to your doctor about your own treatment?
Who would make medical decisions for you and how will they know what you would want?
Advance Care Planning (ACP) is the process of planning for your current and future health care. It is important because, at some point in the future, you may become too unwell to make decisions about your own health care and it may fall to your family or close friends to make them on your behalf. That can be a very stressful time and family members or loved ones may disagree on approaches to your care.
If you think and talk about your values, beliefs and preferences for your health care with your loved ones and doctors, whilst you are well, they will understand your wishes should they need to make decisions on your behalf when you can’t. When these preferences are documented in an Advance Care Plan, they have a legal document to guide them and your doctors to make decisions that reflect your wishes. You can also appoint a Medical Treatment Decision Maker.
An Advance Care Plan only comes into effect if you become so unwell that you are unable to make or communicate your preferences for yourself.
Many of our staff are trained in Advanced Care Planning and can assist you in this process.
We use an approach called ‘A C P in 3-steps’; a simple way for understanding and doing Advance Care Planning:
Advance = Appoint another
You can sign a legal form making it clear who YOU want to make MEDICAL DECISIONS for you if you are too sick to do it yourself. This person is known as the Medical Treatment Decision Maker.
Care = Chat and Communicate
Talk to your Medical Treatment Decision Maker, family, friends and doctors about your values, beliefs and healthcare preferences. Tell them about what is important for you. Also, talk to your doctors or other health professionals to find out more about what might be ahead.
Planning = Put it on Paper
If there is something you feel strongly about, you can write it down in an Advance Care Directive, describing your healthcare preferences and values, or instructions for future medical treatment decisions. You may also like to do this if you have no one to appoint. Give copies of these documents to your Medical Treatment Decision Maker, your doctors, hospital and others involved in your care.
PRACTICAL MATTERS
Your Palliative Care South East team will not only provide medical and emotional support to you during your illness, but will also provide practical support to you. We have heaps of experience and knowledge and will help you when you’re unsure of what to do or who to speak with. Things such as:
- Access to Centrelink/superannuation
- Financial hardship due to medication costs, treatment, family emergency, etc.
- Legal matters, e.g., Last Will & Testament, immigration, etc.
- Home support, e.g., cleaning, shopping/hygiene care
- Referral for an aged care assessment for a home care package/residential respite/permanent care
- Respite arrangement for your carer
- Advice and guidance to help you to organise long-term and short-term care at home
- Speak with hospital staff and help to arrange your post hospital discharge care plan
- Advocacy/support for carers in relation to workplace/school, e.g. access to carer leave, etc.
- Referral to other relevant support agencies according to your needs.
Always remember we are here to help you and your family or carer. Simply ask one of your team. If we don’t know the answer, we will find out for you.
SYMPTOMS AND MEDICINES
Advanced illness and its treatment can leave you with unpleasant symptoms. The palliative care nurses who visit your home will help prevent, manage and resolve common symptoms that may appear. They are experts in controlling symptoms such as pain.
Don’t be too embarrassed to speak with your nurse about your symptoms. It is important to be honest when talking with your nurse. We want to help to relieve your symptoms so that you can have good quality of life.
Medical care is provided by your GP and specialist. Our medical and nursing team will work with your GP and specialists to make sure you have the best symptom management to suit your needs.
You may need palliative medications to treat and/or prevent symptoms associated with your illness. These include symptoms such as
- pain
- nausea and vomiting
- depression
- shortness of breath
- and other issues
The main benefit of these palliative medications is to improve the quality of your life. Our medical and nursing team will explain the need for these medications to you and your family or carer. We will help you to get these medications to use at home.
EMOTIONAL CHALLENGES
You have been told that you have a life-limiting illness….. You may be in shock…… You may feel like you’re on a roller coaster….. You may feel numb……..There are many different emotions that you might feel and that’s OK. Everyone reacts differently to being told that they have a life-limiting illness. Some of the feelings you may experience are:
Emotional
Anxiety, shock, fear, anger, sadness, irritability, numbness, depression, helplessness, hopelessness, despair, acceptance.
Mental
Disbelief, confusion, worry, self judgement, preoccupation with illness or death, regrets.
Physical
Breathlessness, lack of energy, dizziness, muscle weakness, over-sensitivity to noise, hollowness in the stomach, tightness in the chest, tightness in the throat, dry mouth.
Behavioural
Crying, restlessness, appetite loss, social withdrawal, sleep disturbance, absentmindedness, vivid dreams.
Palliative Care South East has many different services to help you – you can talk with our Counsellors, Social Workers, Spiritual Care Worker or our trained Volunteers. You can also work with our Music Therapist to express your feelings through music.
We are here to help you. Talk to us when we visit or call us on 03 5991 1300 at any time.
METHODS TO COPE
Many people think that they are going through this experience alone. But you’re not. Talk with your family and friends when you feel you can. We are here too. Contact Palliative Care South East to talk with us about your emotional challenges. Our experienced team are here to help.
Some helpful tips are listed here:
- Write your feelings on paper or in a diary in order to express them outwardly
- Use drawing, painting or music to bring expression to your feelings
- Talk to your loved one, a trusted friend or a counsellor to express and understand your feelings or concerns
- Learn meditation or breathing techniques to calm your mind, heart and body
- Draw on your religious or spiritual beliefs and practices to cope with your feelings
- Put time aside to reflect on your thoughts and feelings
- Spend time in nature or a quiet space
- Read books/articles that you are interested in
- Allow yourself to be helped and supported by others both physically and emotionally
- Know that it is ok to set some boundaries around your time
- Be involved in your own decision making as much as you can
- Create some small goals for yourself to work towards that are achievable