A hospital-based Palliative Care Pathway for patients with advanced cancer: Bridging the gap between science and practice

Palliative care aims to improve the quality of life of patients and their families dealing with the problems associated with an incurable disease, such as advanced cancer1. Palliative care includes shared decision making (SDM) and advance care planning (ACP), to facilitate the alignment of care to the current and future needs and preferences of patients. Timely integration of palliative care into oncology care is important, to be able to discuss, fulfill and coordinate patients' care needs and preferences in a timely manner before a person loses capacity. The surprise question is often recommended as a tool to identify patients who may be in the final stage of life and thus might benefit from tailored palliative care. A multidisciplinary team approach combined with the use of standardised care pathways has been considered an essential part of such integration. Because oncology and palliative care are increasingly provided in the outpatient setting, various health care professionals, including hospital staff, general practitioners and district nurses, need to collaborate and exchange information. Nevertheless, hospital admissions in the last phase of life are frequent and a substantial number of patients die in the hospital, although most people prefer dying out of hospital.

In the Netherlands, palliative care is mostly provided by non-specialised healthcare professionals, who should have basic knowledge and skills in palliative care. When required, they can seek support from a palliative care specialist. In the Maasstad Hospital, a multidisciplinary group developed a digital standardised 'Palliative Care Pathway' (PCP) for patients with advanced, incurable cancer, to support healthcare professionals in the hospital with the timely initiation and provision of palliative care alongside tumour-specific care. Indications to start the PCP are: a negative answer to the surprise question (“Would you be surprised if this patient died within the next 12 months?”); deterioration of a patient’s performance status; a severe complication of medical treatment; the patient’s wish to stop all medical treatments; and/or a situation where no more anticancer treatment options are available. After opening the PCP, various prompts guide the physician to explore patients’ needs in all palliative care dimensions: physical, psychosocial and/or spiritual. Furthermore, the PCP facilitates the documentation of bad-news and ACP conversations, involvement of family and relatives and coordination of multidisciplinary care.

The overall aim of this thesis is to contribute to the quality and integration of palliative care and oncology care by evaluating hospital care at the end of life and the implementation of a digital standardised PCP. The research questions addressed in this thesis are:

1) Why are patients with advanced cancer admitted to the hospital in the last phase of life and what happens during such hospitalisations?
2) What are the effects of implementation of a standardised digital PCP for patients with advanced cancer on the process of care and the experiences of care of their bereaved relatives?
3) To what extent do hospital discharge letters concerning patients with a limited life expectancy include information about patient’s poor prognosis and preferences for treatment and care?
4) How can 1-year mortality in patients with advanced cancer be predicted?

OUTLINE OF THIS THESIS
Chapter 2 of this thesis includes a retrospective medical record review study to gain insight why patients with advanced cancer are hospitalised at the end of life, so that we better understand to what extent they can be prevented. Chapter 3, 4 and 5 present the pre- and post-intervention study of the effects of implementation of the PCP in the Maasstad Hospital on care processes and adresses a questionnaire study of berevead relatives’ satisfaction with hospital care. Chapter 6 describes a focus group study exploring the experiences of healthcare professionals using the PCP. In a retrospective medical record review presented in Chapter 7, we studied the quality of hospital discharge letters concerning patients with a limited life expectancy. Chapter 8 describes a multicenter prospective study on the development of a clinical model and nomogram to predict 1-year mortality for patients with advanced cancer. The thesis concludes with a discussion of and reflection on the main findings in Chapter 9. A Dutch summary of this thesis is provided in Chapter 10.

Chapter 9 summarizes the main findings of the studies conducted, discusses some methodological considerations, and extensive reflections are provided on a number of topics. It first discusses the significance of integrating palliative care into oncology care, in which advance care planning is an important component. Timely initiation of palliative care seems to be a global challenge. Using the "surprise question" as a tool to timely identify patients' palliative care needs and initiate the PCP was not found to be very effective in our study. The PCP was initiated on average about a month before death, whereas we aimed for a period of several months to a year with the 'surprise question'. The implementation of the PCP may well have generally raised awareness among health care providers of patients' impending death and the need for palliative care, and could support discussions about patients' preferences and appropriate decision-making in the last phase of life, even if it is not actually used for individual patients. Implementation of the PCP in daily practice was complex and challenging. Reflection on the strategy employed in implementing the PCP is given from the concept of " Implementation Science." General conclusions are then drawn from the studies described and recommendations for daily practice and future research follow.