Dr Helena Davies’s health was already in a precarious state when she developed cancer. A consultant paediatric oncologist in the United Kingdom, she had to retire at 46 after being diagnosed with a severe multisystem inflammatory disorder in
which nerve and muscle damage left her wheelchair dependent. Then, 2 years after retiring, she developed breast cancer.
Helena survived and remains cancer-free, but her experience introduced her to the palliative care (PC) team that has continued to support her and manage care of her life-limiting illness.
Quality of death and dying is highest in the United Kingdom and Ireland, according to recent research funded by the Lien Foundation, which ranked 81 countries globally. As well as being the top-scoring country for quality of death, the United Kingdom is also widely regarded as the home of the modern PC movement. Pain management and management of other symptoms were the highest priority for PC patients and their families. Having a clean and safe space and being treated with kindness were also ranked highly.
Improving quality of life
Helena suffers from several noncommunicable diseases (NCDs), including acquired immunodeficiency that resulted in numerous life-threatening septic episodes over 12 years. Her PC is linked to her local hospice, where she has a nominated consultant who
oversees her care. Despite her burden of pain, disability and NCDs, Helena celebrates and values life. The PC team has been crucial to this perspective.
Pain is a perennial problem for Helena, but optimal management by the PC team, with adjustments to doses and drugs as needed, permits daytime functioning and sufficient night-time sleep. Helena also developed severe arthritis, which required joint replacement, and neuropathy, but home treatment with acupuncture has been very beneficial.
Equally, inpatient treatment provided by the hospital PC team has provided vital support, including a 2-week ketamine infusion to successfully treat opioid-induced hyperalgesia and facilitate significant fentanyl reduction and the introduction of methadone for pain control.
Psychotherapy, both for Helena as an individual and jointly with her husband, has been invaluable for negotiating a partnership in which one partner needs a lot of care from the other. Much of this has been provided in the safe home environment.
The PC team liaises closely with other health-care teams and Helena’s general practitioner, including to advocate for treatments to improve her quality of life.
Providing support throughout a life-limiting illness
Helena’s PC has been more about holistically managing her NCDs and disability than about managing cancer. In addition to the management of physical issues, the provision of psychosocial/emotional support has felt sustaining in bleak times for Helena and has helped her overcome periods of depression.
Members of Helena’s PC team have also encouraged her to have social contact and served as valued “listening friends”, exemplifying how quality PC encompasses much more than cancer and end of life. PC can and should provide input throughout the trajectory of a life-limiting illness that is being actively treated.
Helena’s experience of PC is a privileged one, provided at no cost to her through the United Kingdom’s National Health Service. Even within high-income countries, long-term PC of this sort for life-limiting health conditions is by no means standard. Governments and health-care providers globally should strive to make this a more universal experience.