Palliative Care – Clair’s story

I have benefited hugely from early access to palliative care in the form of a community hospice team. I’ve been living with stage 4 bowel cancer for nearly three years now. The first two years were a whirlwind of surgery and chemo, which, although always described as ‘palliative’, didn’t really give me space to plan ahead for the inevitable conclusion of this terminal illness. 

The referral to the hospice team was ostensibly to help me manage pain but has given me so much more. I feel like I have the space, time and support to genuinely talk about what matters to me. With their help, my pain been much better controlled. I have also completed an Advance Care Plan that has helped me feel reassured about what’s to come.

Most importantly, I feel that I have options beyond binary chemo or no chemo. I know that when I’m not on ‘active treatment’, I still have a support network of people able to take good care of me. Since my first time on the chemo ward, I’ve promised myself that I don’t want to be there still when I’m sick and frail. I would so much rather be sitting in my garden or on my sofa. The hospice team involved has helped me see a path to that being possible. 

 You can read more about my story and how I’m working towards a future where wellbeing can be the focus of end of life care for everyone here: www.dyingwell.uk

What would I like healthcare professionals to learn from my experience?

Palliative Care should be so much more routinely offered to people living with a terminal illness, even if they are not yet at the end of their life. There is so much evidence around improved outcomes in terms of quality of life and quantity of life. Yet palliative care is often given as a last resort. I’m a huge advocate of medical professionals speaking honestly to patients about death and dying and offering practical support for living with a terminal illness that goes beyond just medical intervention.

I think medical professionals worry that patients don’t want to hear this, but what patients fear most is the unknown and being left alone. Involving palliative care or hospice teams early in a patient’s care pathway can

  • alleviate those fears,
  • help the patient prepare for what’s to come, and
  • make the most of the time they have left.

I have benefited from a parallel approach where oncology teams and the hospice team are involved in my care. This has undoubtedly improved my quality of life, but I also think it made my care more efficient.  I am clearer about what I want to do and better able to manage my own health and treatment.

I would encourage professionals looking after patients with a terminal illness to make the time for these difficult but honest conversations.  Teams also need to be willing to make early referrals to palliative and hospice teams.

I'm a huge advocate of medical professionals speaking honestly to patients about death and dying and offering practical support for living with a terminal illness that goes beyond just medical intervention.

What would I like other patients to learn from my experience?

The first time I saw the box ticked for ‘palliative’ treatment, I was scared. It hit me that my illness was serious and that this cancer was probably going to kill me. That was nearly three years ago. And in that time, I’ve learned that dying really is mostly about living.

I know that the thought of being referred to a palliative care team or a hospice might feel like signing up for the end. But I promise you that doing these things does not make you die any sooner! In fact, the opposite is true. Palliative Care and hospice teams are often much more focused on helping you live well and do what you want to do. As opposed to the treatment treadmill that clinical oncology can sometimes feel like.

Without the Hospice team, I would have had to give up work earlier. My pain wouldn’t be well managed. I would probably feel less confident in making plans and booking holidays.  Certainly, I would feel more nervous about what’s to come. Instead, I  have found the conversations with the hospice team to be empowering and supportive. They are not clock watching and don’t have an agenda – they genuinely want to support me in living the life I want to live.

I am a passionate advocate for early intervention palliative or hospice care. I would 100% recommend that anyone living with a life-limiting or terminal illness seek a referral.

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