Cancer care at the end-of-life: expenditures, barriers to access and quality-of-life

Medical and technological advancements in cancer care have introduced treatments that successfully have lengthened the lives of patients with cancer. Some cancer types can be cured, while others can be maintained at a level where the patient can live with cancer, similar to other chronic diseases. Despite these advancements, cancer remains one of the leading causes of death and affects millions of people every day. This highlights the importance of prioritizing end-of-life (EoL) care, because many patients will reach a point where cure is no longer an option.

Manuscript 1. Cancer care at the end of life: Systemwide expenditure in a national health service

The literature points to different aspects when assessing the pathways of EoL cancer care. Specialized palliative care (SPC) has been associated with better Health-related Quality of Life (HRQoL) and a better chance of realizing EoL wishes and expectations. Referral to SPC has also, by some, been emphasized as an indicator of good quality care at EoL. Some studies, primarily US based, have found SPC to be associated with lower costs of care at EoL. Moreover, SPC has been associated with less aggressive treatment strategies, including cancer targeted treatments (CTT) near time of death. When CTT is administered close in time to death, there is an increased risk of severe adverse events and reduced HRQoL, for some patients even an earlier death. Also, CTT late in life is shown to cause an increase in care costs in the secondary sector. Discontinuation of CTT prior to the last 30 days of life is, by some, considered an indicator of good quality EoL care.

Despite it being well known that SPC has the possibility of increasing HRQoL, while the opposite is the case for continued CTT, little is known about how these treatment choices at EoL impacts on healthcare utilization across different care settings in the health care system. Our first study feeds into the gap by investigating the consequences of specific treatment choices - as defined by exposure to SPC and timely discontinuation of CTT - on healthcare utilization in the primary, secondary, and community and home-based care. Healthcare utilization was measured as setting specific expenditure the last four weeks of life in relation to exposure to SPC and timely discontinuation of CTT. Our study found that being exposed to SPC was associated with lower total expenditure, driven by lower hospital expenditure, when compared with those not exposed to SPC. Timely discontinuation of CTT was associated with decreased total expenditure, driven by a reduction in hospital expenditure, when compared with those that did receive CTT within the last 30 days of life.

Manuscript 2. Supply-side barrier in access to Specialized Palliative Care: A population study.

Even though SPC internationally has been established as good quality care, SPC capacity in Denmark does not live up to the recommendations issued by the European Association for Palliative care. The Danish National Audit under the Government has criticized the responsible bodies (the regions) for insufficient palliative capacity, not adhering to national referral guidelines, and lack of continuous screening. Patients are either referred very late in their disease trajectory, or not at all. Whilst previous studies have established several patient characteristics, such as level of education, income, living alone, or having children, as barriers to gaining access to SPC, little attention has been paid to the supply side. The lack of uniformly implemented national referral guideline may complicate referral of a patient from one hospital to another, creating a barrier on the supply side. As cancer treatment is highly centralized, some patients receive their cancer treatment at one hospital and their SPC, which is less centralized, at another hospital under a separate management. In the second study we investigated if there was evidence of a supply-side barrier in SPC access. We did this by analyzing the probability of referral to SPC from the hospital if a patient was not eligible of receiving SPC at a department under the same management as where they were treated for their cancer disease. Moreover, we investigate if separate management was associated with SPC referral timing. The study found consistent evidence of a supply side barrier in access to SPC.

Manuscript 3. Trajectory of quality of life among patients with cancer: A longitudinal survey study

Little is known about the general HRQoL in patients with cancer when approaching time of death. Within cancer research, the disease specific European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) is widely used. This questionnaire contains 30 questions pertaining to patient perceived functioning and disease and treatment related symptoms/items. The generic Euroqol questionnaire EQ-5D-5L is widely used when conducting health economic evaluations of healthcare interventions. The EQ-5D-5L responses are used for computing Quality Adjusted Life years (QALY), which can be used across different diseases to estimate effectiveness of interventions. With the establishment of the Danish Medicine council, and their introduction of QALY, the demand for healthcare researchers to use generic Multi-Attribute Utility-Instruments, such as the EQ-5D-5L has grown. It has been put forward that the EQ-5D-5L is less sensitive to changes in HRQoL in patients with cancer at EoL, as it may not capture the decline or improvement in health as good as the disease specific questionnaires.

Most evidence on the perceived HRQoL of patients with cancer comes from Randomized Controlled Trials (RCT’s). Often these studies include a very specific group of patients and may not represent the general cancer population. Other studies that have investigated HRQoL at EoL have done so for specific cancer types, or in patient groups informed of their terminal state. Not much is known about the HRQoL in the general patient with cancer as their time of death approaches. In the third manuscript in this thesis, we investigated HRQoL, as measured by the EQ-5D-5L and the EORTCQLQ-C30, in patients with cancer close to the time of death. We analyzed HRQoL over time as patients approach time of death, both as total scores, and decomposed into relevant items of the two scales. The study was conducted using a unique dataset compiled of prospectively collected longitudinal survey data, patient journal data, and register data. Data was combined using the unique person identification number (CPR-number) given to all citizen with a permanent Danish address. The study found that HRQoL, as measured by both instruments, decline when approaching time of death. The decomposed instruments indicate that items associated with autonomy drive the results.

Contributions

The main contribution of this thesis is new insights to the consequences of different care pathways at end of life in patients with cancer. The research of this thesis underlines the nuances and different contributing factors of inequality in healthcare access other than patient characteristics. Supply-side barriers also represent a challenge. Finally, in this thesis I describe HRQoL in patients with cancer as time of death approaches. I show that the generic and disease specific questionnaires capture different changes in HRQoL at EoL, which should be considered when conducting future survey studies within this patient group. All in all, this thesis provides valuable new insight into a vulnerable patient group. These insights are central when prioritizing, planning, and conducting care.