Through honest conversations with a palliative care doctor, discussing preferences for her ongoing care and early referral to palliative care, Nina was given the opportunity to consider what was important to her, and her young family.
Nina* was a teacher. Married, with a 3-year-old daughter, she was 35 when she was diagnosed with a rare soft tissue cancer, which had spread to her lungs.
She stopped working to focus on her health and family, and although she was still up and about every day, her oncologist referred her to Alignd so she could access palliative care through her medical scheme. Nina wasn’t referred to palliative care because she was weeks away from dying – she wasn’t; but because Nina and her family needed support – effective symptomatic support, psychosocial support and medical emergency support should it be required. Nina was also very sure she wanted to be at home as much as possible, and avoid lonely and stressful hospital stays. She didn’t want to miss a moment of her daughter’s life. Having a palliative care team working alongside her disease-directed medical team would give her that control.
Planning ahead with an advance care plan
Nina and her husband met with their palliative care doctor and drew up a written advance care plan to record how they would like her care goals to be met. An after-hours emergency plan was put in place too. Nina was so grateful for the advance care plan discussion, because she had wanted to broach the subject of her end-of-life wishes with her husband but felt ill-equipped to do so.
The psychosocial impact of terminal cancer on this young family was immense, and a palliative care trained social worker was involved from the start. A paediatrician was also consulted to assist with their young daughter’s emotional well-being.
Nina was encouraged to do some legacy work for her daughter, and she created a beautiful milestones book of letters, poems and photos.
The severe nerve pain Nina experienced was challenging but instead of having to go into hospital regularly, her palliative care trained doctor and nursing sister consulted at her home so she was always comfortable. And when she developed a chest infection, again she was able to stay at home and be treated with antibiotics and home oxygen. The trauma of being uprooted from her home and her loved ones was removed.
At home and supported
A few months later Nina’s overall health began to deteriorate. She was bed-bound and she could no longer take oral medication. She was very clear she wanted to die at home. Her early palliative care enrolment (while she was still receiving curative care) enabled excellent home-based palliative care, with no crisis management required.
When Nina died, she was at home, and she was pain-free and peaceful. And her family felt supported.
For Nina, having access to effective and ongoing palliative care meant the ability to live longer and to experience each moment of her life more fully as a result of effective pain and symptom management. Integrating palliative counselling earlier on in the treatment trajectory helped Nina’s family navigate the emotional burden that accompanies a disease like cancer.
*Name has been changed
