Background: My husband Jay was diagnosed with stage 4 lung cancer in March 2011 and was given less than a year to live. He was 39 and had no obvious risk factors for developing the disease. We had an eight year old daughter and I was pregnant with our second child when he was diagnosed. He survived the disease for over 6 years passing away in May 2017. He was having active treatment for his disease for its entirety.  His treatment was always considered “palliative” right from diagnosis.

I still remember the shocked and puzzled look on my husband’s face the first time he overheard me describe his treatment regimen as “palliative chemotherapy” to a family member in conversation. I remember exactly where we were because it was a moment frozen in time. Although technically the meaning was indifferent to what my husband had been advised in his medical appointments, the actual use of the particular word “palliative” sent shockwaves through his mind.

“What do you mean my treatment is palliative? Am I going to a hospice? Am I going now or in the next few weeks?” He said.

This followed by his thoughts of fear.

“Does that mean I won’t see my oncologist anymore? Has he given up on me? What happens if I get cured, because I still believe in that you know, I have a faith!” He said.

This panic simply because of one word - palliative. In the oncologist’s office, Jay had heard his disease being referred to as incurable, a stage 4 disease and a metastatic disease. We were told there was hope to control the disease and prolong his life along with the advice that he could go downhill really fast. Chemotherapy couldn’t get rid of the disease and surgery wasn’t an option.  Chemotherapy will only give him some more time.

However amongst all those various words and phrases, the specific term “palliative” had not been vocalised, not that my husband recalled anyway. This variation of one word had such a different meaning to him than all the other words and phrases he heard.

I immediately alleviated Jay’s concerns. As a nurse, I felt it was important for him to understand the meaning of this word in the context of his disease. I explained how early palliative care is about ensuring that his quality life is the very best possible when living with an incurable and serious illness. I explained that early palliative care can include active cancer treatment and that he would continue to see his oncologist. I also clarified that he would still be eligible for clinical trials and new innovative treatments so long as he remained well enough. He was certainly surprised that with any of this still part of the picture that could be considered ‘palliative care’.

Palliative care, in this instance, simply meant that chemotherapy was given without the expectation that it would result in a cure. It was anticipated by his doctor that he would be living with the cancer for the rest of his life. There would be no ‘we are finished’ treatment party and no ‘I’m in remission party’. Treatment was about persisting in trying to control a disease that could not be cured and managing a disease that can have significant side effects physically, mentally, emotionally and spiritually.

The physical symptoms included managing coughs, shortness of breath, fatigue, appetite issues and pain. There were also spiritual, emotional and mental health needs. Palliative care can often also incorporate the needs of the carer and family involved through social work support and overall care coordinating.

With all this explained, he thought palliative care was just fabulous! He felt comforted by the fact that a team of doctors and health care professionals could at any time could become involved in his care that would help him live better while living with and treating his cancer. This could also happen in collaboration with his oncologist, not necessarily forsaking one for the other.

Suddenly the idea of palliative care was not something to be seen as a threat to his hope or care but rather something that was available to assist him through his entire diagnosis not just at the end of his illness but the entirety of the disease from diagnosis!

“If they can’t cure my illness, then this is the next best thing to help me to live with this disease as best I can” he said.

I also explained to him that palliative care is not something you become. Palliative care is a service that you need and, one that when used early, can be used intermittently and as needed. There were times throughout his diagnosis where he would have some palliative care services provided if treatment wasn't working well. When starting a new treatment where all his symptoms of disease disappeared, those services were then ceased.

Jay realised how different and how wide the spectrum of palliative care services is. He felt passionate about enlightening others to this. At the point of having survived lung cancer for several years, he was invited to speak to a class of nursing students about his understanding of what palliative meant to him and how he came to grasp the use of this word that once sent shudders up his spine.

He enjoyed being able to talk about his cancer diagnosis as incurable/terminal/palliative and how he continued to live well and for many years without ever having to need any end stage palliative care services. He also talked about how he had participated in clinical trials to treat his cancer, something that he never knew could be part of being considered ‘palliative’. Talking to nurses about early palliative care became a regular occurrence and something he enjoyed. He honestly felt that people needed to have more understanding of the word palliative and also the broader scope of palliative care. He enjoyed making his point by standing up in front of a class of training nurses.

Jay told them, “You don't need to be in hospice bed or dying to be palliative. My cancer is diagnosed as stage 4 and incurable and I’m palliative however I’m early in palliative care which means I’m stilling being treated, I still see my oncologist, I still work, I’m still eligible for clinical trials and I still live fairly normally. Should I have any symptoms of my illness that need attention, I have access to a special team of doctors, health professionals and services that will help manage this in the best way possible”.

“At any point when my disease is unable to be controlled with treatment or if I decide to stop treatment,  the specialist team will  continue on with my care and transition my services as needed to accommodate end stage palliative care. Someone can be early stage palliative for a very long time, like me,” he said.

Interestingly, my husband never really experienced end stage palliative care. Despite his chronic illness, he transitioned from wellness, active treatment and intermittent early stage palliative care to passing away in a very short time of less than two to three days. He was admitted to hospital with an acute complication of his cancer and he passed away very peacefully in hospital. Despite not needing end stage palliative care services, his understanding of all-encompassing palliative care services throughout his 6 year journey gave him peace and comfort. We were also inevitably prepared for any event that could thrust him into end stage palliative care at any time.

In understanding the expectations of treatment, we had made preparations early on (advance care planning) in regards to financial planning, preparation of wills, power of attorney, spiritual care from his priest, emotional care from a psychologist and were able to instigate psychological and spiritual care for our children. Given we had no end stage palliative care, the fact this was addressed in early stage palliative care in retrospect was priceless. Early stage palliative care never took away our hope. Instead, it allowed us to understand the seriousness of his disease and allowed his symptoms to be managed well when they occurred.

Although these discussions were initially confronting and frightening, it was a discussion we were both always thankful for. It brought him great comfort to know that many things had been sorted and he was comforted by the fact that this would not all be left to me to sort out on my own.