Hope in death

In January, I was sitting down with a palliative care team discussing how I wanted to die. I did not ask about what I could expect. I didn’t ask about the pain I would feel. I did not ask about how I will lose my independence. I already knew what to expect from my last months or weeks of my life.

Instead, I told the palliative care team what I wanted. I told them how I wanted to die. I wanted to die in my family home. I did not want to spend my last days in a hospital. I wanted to die in the bed I share with my husband. I did not want to be forced into a single hospital bed away from my husband.

I know that my last weeks aren’t going to be nice and I am either going to be in pain or out to it on painkillers, but all I can wish for is an ounce of control. Control that cancer would slowly take away from me.

Even though January feels like it was a lifetime ago and I am no longer faced with the idea that I may only have a few short months to live. There is no escaping the reality that I live with a terminal illness. This cancer will catch up to me and I know there will be a time when, once again, I am told that I only have a short amount of time.  However, I was taken back to this time in the past weeks when I read about an amazing 29 year old living in the USA.

Brittany Maynard is a wife, a daughter, and a friend. Brittany has dreams of starting a family with her new husband, but her dreams were shattered when she was diagnosed with the most aggressive and lethal form of brain cancer, glioblastoma. Brittany’s diagnosis is terminal.

Via The Brittany Maynard Fund.

Brittany and I have a lot in common. We are both young females in our 20s. We both were married a short time ago. We are both adventurous and love to travel. And, we both have terminal cancer.

Our similarities don’t stop there though. We have both had our dream of starting a family taken away from us. We both have hopes to spend our last ‘however long’ taking advantage of every ounce of energy we have spending time with our family and friends. We both wish to spend our last days in our family home where we will be surrounded by loved ones. We both wish to share our bed with our husband to death do us part. We both wish to die without pain and with dignity.

However, what separates the two of us is that she has control of how she dies. I can hope for all of those points above, but at the end of the day, when the end is near I am going to lose all control and the reality is that I will see pain and I will be dependent on my family and health providers – my dignity will be out of my control.

Brittany and her family have moved interstate so that she can avoid the painful last stages of her disease and opt to use the ‘Death With Dignity Act’. This allows the terminally ill to choose to ‘end their lives through the voluntary self-administration of lethal medication, expressly prescribed by a physician for that purpose’.

Many people over the last week have asked me for my opinion on the ‘Death With Dignity Act’. I guess I am the perfect person to ask. I have been faced with my own death. I have planned for my own death. Not many people can imagine what they would feel like.

My response to these people has been, ‘I totally understand’.

Serge and I wishing for a happy 'however long'.

I am not going to spend time trying to convince you why this law should be passed in Australia, because, to be honest, I don’t know if I would ever choose to take advantage of it myself. But, gosh, the relief that I would feel having that option makes this conversation worthwhile. 

For me, it all comes down to a question that you have probably been faced with in one of those ‘get to know each other’ activities.

Would you rather die peacefully today or die painfully in 2 weeks?

I want you to keep that question in mind.

For me, ‘death with dignity’ is not something that you use when you find you have a terminal diagnosis. It is something you consider when you have exhausted all your options and physically, not emotionally, know that death is not far away. I think this is one of the main points that people miss when forming an opinion on this law. I want to stress that Brittany would not be taking the easy way out, if she was, she would have chosen to end her life when she was first diagnosed. Instead, she has been living life to the fullest and has chosen to end her life when her symptoms do not allow her to live life in a dignified way. Therefore, it is not about Brittany potentially missing out on a miracle, but instead choosing to die peacefully instead of suffering and dying in pain. It is an option that is there for her when and if she decides.

My hope is to be surrounded by my wonderful family in my last months and weeks.

If Australia had these same laws, I probably would choose to go through the process of obtaining these drugs. I do not know if I would ever consider using them, but the option offers relief. I would still continue to live life to the fullest, enjoy travelling and spending time with Serge, family and friends, but I could control the end of this disease where I am faced with pain and suffering. I could ensure that memories aren’t tainted by a painful death. 

I would like the choice to take the option of dying peacefully, in the bed I share with my husband and surrounded by the people I love, instead of dying painfully a short time later.

I wish happiness to Brittany, her husband, family and friends in this time. You are truly an amazing woman, who is the ultimate example of living life with purpose and to the fullest. I am so glad that your story has been shared and I hope that people can be open to your story.