Supportive care and end of life issues
Supportive Palliative and End-of-Life Care are fundamental stages that everyone diagnosed with a lung disease will face. It can be confusing to know what these different stages are, what they mean for you and when they might apply. We are individuals and every person’s journey and lung disease is different, so your needs will also be different.
What is palliative care, and what is supportive care?
Palliative care does not necessarily mean ‘end-of-life’. The past few years have seen the title change to include Supportive Care. The focus of Supportive and Palliative Care is to help you achieve and maintain the best quality of life you can for as long as you can; it makes sure your physical, practical, emotional and spiritual needs are being catered to; and it helps you to control symptoms that may arise during the course of your lung disease so you can feel some control in your situation.
It is advisable to access Supportive and Palliative care early on, as this has been found to have better outcomes for patients. Due to improved medicines to treat your lung disease and better relieve any side effects, some people receive Supportive and Palliative Care together with their treatments for several years in order to live for as long as possible with the highest quality of life within the limits of their lung disease.
Supportive and Palliative Care focuses on “symptom management”, for example, managing your fatigue or breathlessness when the symptoms become worse and your medicines are not as effective or are no longer keeping your symptoms under control.
Supportive and Palliative Care services can initially be provided by your GP, specialist, nurse and allied health staff. You may be referred to a specialist palliative care team, if your lung disease progresses and as your needs become more complex. Supportive and Palliative care also offers support to families and caregivers in their adjustments to some of the lifestyle changes that they may have to face.
It is important to understand that just because a patient accesses supportive and palliative care services DOES NOT mean that they are near the end of their life. In fact, one reason patients choose not to access these services is because they think that by doing so they have accepted defeat or given up hope, and that death is near. In reality if you access supportive and palliative care services early it is proven to increase your quality of life, because it helps to reduce side effects and assists in managing the symptoms of your lung disease. Many people who have been referred to supportive and palliative care services wish they had been referred earlier because of how much the service has benefited them.
At this stage you can choose where you would like to be at this time, taking into consideration where you would be most at ease, e.g. in your home, hospital or hospice. End-of-life care ensures you are as comfortable and as pain free as you can be. End-of-life treatments can include opiates (also used in the treatment of breathlessness) or respirators.
What treatments and life prolonging measures you receive at this time is your choice. You should discuss your wishes with your doctor, family and caregivers so they are aware and can ensure your wishes are adhered to when you can no longer communicate them. This is when your Advanced Healthcare Directive and Enduring guardian assist you and ensure your requests for medical care and intervention are followed.
For many reasons your doctor may not bring up end of life issues. Your doctor does not want to offend you or make you feel hopeless. Starting this conversation may be difficult, but it’s important to discuss the topic as your health professional can assist you with your decision making, helping you to access legal advice and documents, and provide advice on services that are available to you. You may find it useful to have a list of questions to prompt you during your appointment and ensure all of your questions or concerns are answered. Remember that it is your right to choose or refuse treatments at any time.
Questions you can ask your health professional regarding supportive, palliative or end-of-life care
Some questions you might consider asking are:
- How can I remain as independent as possible?
- What treatments can I expect?
- Are there other treatments available that might help me and my lung disease?
- Will I receive conventional medical treatment if I have supportive care?
- Which health professionals will be a part of my supportive and palliative care team and who will coordinate my care?
- Do I have to pay for any supportive or palliative care services?
- Where will I receive supportive care?
- If I’m at home, what kind of help will be available?
- Can my family or carer access respite care or other assistance?
- Can I call the palliative care team at any time?
- How long do I need supportive care for?
- What will happen in the future to my body? How will I feel?
- I am worried about being unable to support my children financially and emotionally. What help is available?
- Can you help me talk to my family about what is happening to me?
- Are there any complementary therapies that might help?
- Can I get a second opinion about my need for supportive care?