It is not easy to talk about end of life issues and how you can prepare yourself and your family for this possibility. There are many things to consider when you are told that you have a serious, potentially life threatening disease. Most people do not like to think or talk about end of life issues in our society much less think or talk about one’s own death. For most individuals, these issues are very scary and overwhelming. Despite this, it is important for every person to think about what your wishes would be and what you would want your quality of life to be. When you are diagnosed with a serious and rare disease such as sarcoma, it is important to try and prepare yourself and your family in many ways. This is true of all individuals who are diagnosed with cancer or any other serious disease. Preparing yourself and your family is even more important if you have been told that your disease is incurable. Every time you go to the hospital, you will be asked to make choices about your care. It is best to educate yourself as much as possible so that you can make informed decisions for yourself. This can be an overwhelming process and it is difficult to do this alone. Besides your health care providers, it is essential to enlist support from family, close friends, people from your community/church, social workers and others to help you in this process.
Where do I start?
No one can accurately determine how long someone can live with incurable disease. There are often palliative treatment options that can be offered that won’t cure the disease but can possibly extend your life and/or provide comfort and relief of symptoms. There are things that you can do to prepare for this period in your life and make this time in your life the best it can possibly be. One of the first steps is to start thinking and talking about what your wishes would be. The link below to The Conversation Project can teach you to start an end of life conversation with yourself, your loved ones and your healthcare providers. The Conversation Project’s Starter Kit provides this information in several languages: English, French, Spanish, and Mandarin.
Advanced Care Planning and Palliative Care
Once you have started the process of communicating about end of life, you can then start planning ahead. The National Hospice and Palliative Care Organization has an excellent website called Caring Connections which has many resources about advanced care planning, advance directives, financial information and a checklist for planning ahead.
Palliative care is specialized medical care for people with serious illnesses. Palliative care focuses on quality of life and relief of the symptoms, pain and stress that serious illness can bring. It is provided by a team of specialists that work with your usual health care providers to provide an additional layer of support at any age and any stage in a serious illness and can be provided alongside curative treatment. This care is provided by a multidisciplinary team which consists of doctors, nurses, social workers and others to help relieve suffering and treat symptoms so that you can live as well as you can despite the disease. Palliative care can be provided at any stage of a serious illness but it becomes very important if you have been told that you have advanced incurable disease. Hospice care is a segment of palliative care that can be provided when a person has a prognosis of less than 6 months. People often will wait until very late in the dying process to receive the many benefits that hospice can provide at the end of life.
A 17 year old with osteosarcoma who made choices about how he wanted to live the end of his life
My Last Days: Meet Zach Sobiech: https://www.youtube.com/watch?v=9NjKgV65fpo
Resources For Caregivers
Being the caregiver of someone at the end of life is an important responsibility and can be extremely difficult. Listed below are some resources to help you in this process.