Navigators have an essential role in ensuring that quality survivorship care begins at diagnosis and continues throughout the balance of patients’ lives. To be able to address the needs of [ Read More ]
March 2017 VOL 8, NO 3
At the Heart of Survivorship Is “Person-Centered Care”
Surviving cancer begins at diagnosis, according to Natalie Doyle, DNP, Nurse Consultant for Living With and Beyond Cancer at the Royal Marsden NHS Foundation Trust in London, UK. And in the delivery of survivorship programs, oncology nurses have a duty to the person as whole, not just to their cancer.
“More and more people are living longer with incurable cancer, and caring for these patients is one of the biggest challenges we face as oncology nurses,” she said at the International Association for the Study of Lung Cancer 17th World Conference on Lung Cancer. “The other big challenge is dealing with the consequences of treatment.”
Cancer has become a chronic disease, but the earlier a diagnosis is made, the more likely a patient is to survive, so oncology nurses put a substantial amount of effort into early diagnosis. “But the irony is that for patients, going to treatment at a cancer center every day can become the easy part, because at that point they’re being told what to do,” she said. “But the end of treatment is almost never the full story.”
Making the patient a partner in the cancer care plan is vital, as this allows healthcare to be delivered more effectively and efficiently. Patients want information and control, she said, but they also want guidance, and a personalized approach to cancer care enables patients to live as full a life as possible. “In deciding what sort of treatment a patient wants or needs, ask them what they’re trying to achieve and what they want out of their life,” she advised. “It’s not always length; it’s usually quality, and as people are living longer with their disease, this becomes even more important.”
Providers should aim to move beyond adherence—to concordance—so that patients understand exactly why they’re taking their cancer drugs, what exactly those drugs will do to them, and the consequences of nonadherence to treatment.
“If I have 1 take-home message, it’s the fact that we should strive for person-centered care, not patient-centered care,” she said. “We need to move away from the idea of the power balance and work with other people in partnership. This is a really big challenge for nurses and doctors.”
Ask the slightly awkward questions of patients, she advised. This can help the care team determine where cancer treatment fits into patients’ lives, and not the other way around. “Communicate, to avoid making assumptions,” she said. “People with cancer will always know more about themselves than you do. You might know more about [cancer in general], but it’s bringing those 2 parts together that’s fundamental to any survivorship program.”
At the core of survivorship is cancer rehabilitation, which is not a new idea, she noted. The biggest component is prevention—reducing the impact of expected disabilities and improving coping strategies—while restorative, supportive, and eventually palliative care play major roles as well.
One small aspect of the recovery package at home is health and well-being events, Dr Doyle said. Group events provide the opportunity for social learning, a shared emotional experience, and an opportunity to impart knowledge and teach new skills. These events tend to be administratively burdensome and personnel heavy, but getting people to an event is one of the easiest ways to obtain a large amount of practical information from a large number of participants at 1 time. “These events are cost-effective, and we do have to consider that aspect,” she noted. “But also, there’s something about being in a group that’s incredibly supportive.” Peer meetings also help patients with the often difficult transition from “patient” to “survivor,” thereby improving their psychological well-being.
Dr Doyle encourages providers of cancer care to give choice to each individual by embracing shared decision-making and to use the principles of person-centered care to underpin all aspects of the delivery of care. The concept of survivorship is developing at different paces around the world, but lessons can be shared among survivorship programs. “There’s more that unites cancer patients than divides them,” she said. “So let’s all pull together as oncology nurses and create a survivorship program that’s actually just our day-to-day work.”
The continuum of care for cancer patients following active treatment includes the transition to survivorship and end-of-life care. Care transition refers to the movement that patients make between healthcare practitioners [ Read More ]