Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

Abstract

Colorectal cancer is the second highest cause of cancer deaths. There are significant physical and psycho‐social effects on quality of life with advanced disease. Despite this, there are few accounts of the patient experience from advanced illness through to dying. We elicited the longitudinal experiences of living and dying with incurable metastatic colorectal cancer by conducting serial interviews with patients for 12 months or until they died. The interviews were analysed, using a narrative approach, longitudinally as case studies and then together. Thirty‐six interviews with 16 patients were conducted. Patients experience metastatic colorectal cancer in three phases; (1) Diagnosis and initial treatment; (2) Deterioration and social isolation and (3) Death and dying. Many patients initially said they hoped to survive, but, as “private” and in‐depth accounts of the experience emerged in further interviews, so did the understanding that this hope co‐existed with the knowledge that death was near. Palliative chemotherapy and the challenge of accessing private accounts of patient experience can inhibit care planning and prevent patients benefitting from an active holistic palliative care approach earlier in the disease trajectory. This study has immediate clinical relevance for health care professionals in oncology, palliative care and primary care.

Operationalizing patient‐centered cancer care: A systematic review and synthesis of the qualitative literature on cancer patients' needs, values, and preferences

“…There was one theme related to physical wellness, support of physical well-being, and four themes related to emotional support: have to do this, I have to do this'…they don't even question…He's God…that faith cures people more than other stuff but yet if you see among the general populace especially the urban, without counseling, they're suffering a huge lot. 68(p395) General values Autonomy [40][41][42] Hope 42,43 Being involved 40,[44][45][46][47] Being listened to 45,47 Being involved in decision-making 40,44,46 Taking action 42,43 Family 40,42,43 Normality 42,[48][49][50][51] Sincerity 41,47 Needs Care coordination 40,42,43,45,49,[52][53][54][55][56][57] Timely care access and scheduling 44,49,54,55,58 Advising/Answering patient questions 43,45,…”

Uncertain diagnosis and prognosis in advanced melanoma: a qualitative study of the experiences of bereaved carers in a time of immune and targeted therapies

“…Medical specialists can assist carers in managing uncertainty through the provision of information, including information about prognostic uncertainty . Indeed, the most common information need among those affected by melanoma is the need for information concerning prognosis .…”

“…Communication with medical specialists during diagnosis and treatment planning is crucial as it can influence the patient's emotional state and attitude towards treatment decisions . Studies with carers also show that they desire information about possible outcomes of care, including knowledge that the patient was ‘sick enough to die’ . This is fraught with complexity: what and how much information to give?…”

Rehabilitation of Advanced Cancer Patients in Palliative Care Unit

“…Exercise provides benefits to reduce fatigue during adjuvant radiotherapy in breast cancer patients [ 4 ]. Incurable cancer patients could have a relatively long lifetime, and they experience various burdens from cancer and QoL issues [ 5 6 ]. Rehabilitation can help these patients.…”