Palliative care is the umbrella term used for care provided to people whose aim of treatment is no longer curative. People usually associate palliative care with dying, or “terminal” and although this is not entirely incorrect, palliative care does not mean you are imminently dying. You are still able to live a full life while being palliative, and it is important to know that. Most importantly, palliative care is about identifying what is important for you and providing support and care to ensure you can do the things that you value the most.
When treatment no longer starts to be effective, you may start experiencing symptoms that impact your day-to-day life. Palliative care looks at supporting these symptoms, so you are able to continue living an active life.
Palliative care is a holistic approach that helps identifies what is important to you. It also sets expectations on what can be accomplished and then puts in resources, aids or other means of support to help you continue living your life based on these needs. For example, for those who enjoy going for long walks outside with friends, but now no longer has the mobility or energy to do so, palliative care would suggest setting a weekly walk somewhere nearby with a friend or loved one, or provide you with a wheelchair.
Coming to terms with aim of treatments can be difficult. If you are told that your treatment is no longer effective and aims of treatment have changed from curative to palliative, you are able to gain a second opinion. Being informed can be very empowering, as well as provide you with all the decisions you need to make the best decisions for your care. For many patients and carers, the transition into palliative can be a shock, and cause an array of emotions. Speaking to a psychologist, counsellor or spiritual support can help you and your family relay your feelings and identify what is important to you. It can be a very cathartic experience and allow you to come to terms with your prognosis. Doctors often encourage a second opinion and can refer you to another specialist should you wish to find other treatment options. If you find your doctor is not encouraging you to gain a second opinion, depending on where you live, you could pay out of pocket to discuss with another oncologist. Out of pocket consultations can be expensive though, so it is important to keep this in mind.
It can be very difficult and emotionally challenging telling your friends and loved ones that your aim of treatment is palliative. If you feel you cannot do this yourself, your doctors, nurses, or pastoral care (or similar spiritual leaders), will be able to provide an environment to discuss your treatment and future options with your family. As well as answer any questions or fears they may have.
Providing a safe environment where people are able to freely express their feelings is very important. This means that you may not be the only person who may benefit from outside help. Friends and family may not want to bother you with their thoughts or feelings, but do need to express them. Counsellors can also help express emotions in a safe environment.