Discussing Goals of Care and Advance Care Planning
Patients need guidance and support while they make plans for their futures. Unfortunately, studies have repeatedly documented that patients with incurable cancer are confused regarding their prognoses and goals of care,[10,11] making them more likely to choose aggressive medical care at the end of life.[12,13] The potential for inappropriate aggressive treatment at the end of life was recently highlighted in a large population-based study from Canada that demonstrated increasing rates of chemotherapy administration within 14 days of death, and of emergency department visits and intensive care unit admissions within 30 days of death. An important function of palliative care in this setting is educating patients about their disease so they can make informed choices and select care plans that match their overall goals. The need for communication and collaboration among care providers is especially great now in the setting of minimal metastatic cancer, in which the evolving, aggressive, and expensive approach to treating oligometastatic disease is blurring the line between potentially curative and palliative management.
In the study by Temel et al, patients receiving the early palliative care intervention were more likely to remain accurate or become accurate in their perceptions of their own curability compared with patients receiving standard oncology care alone.[2,13] This improved accuracy also appeared to affect treatment choices, as patients with an accurate perception of the state of their malignancy received significantly less intravenous chemotherapy near the end of life. These are important findings: they demonstrate that the palliative care program had an impact on treatment choices, and that its influence extended to the domain of potentially life-prolonging anti-cancer therapy, and not just the traditional “palliative” domain of pain and symptom control.
Having palliative care integrated with oncologic care can also aid patients who indeed choose more aggressive treatment, but unfortunately many of them decline assistance because of a false belief that accepting palliative care will lead to treatment decisions that will shorten their lifespan. This approach impedes patients and their families from receiving care for physical, psychosocial, and spiritual issues, and it ignores both the knowledge and experience of palliative care specialists and the important contributions they can make to decisions regarding anti-cancer therapies. There is also evidence suggesting that patients with advanced cancer who receive early palliative care actually live longer than those who do not, irrespective of the aggressiveness of their anti-cancer treatment.[2,7,15]
Beyond the obvious benefits to patients and families in terms of decision-making, palliative care interventions involving goal setting and advance care planning may also reduce utilization of cancer center and hospital resources, and thereby lower healthcare costs. Hospital admissions and unplanned readmissions can be reduced, as can outpatient appointments for specialty care. Patients are also more likely to have resuscitation preferences documented, and this can reduce futile and costly end-of-life heroic measures and intensive care unit admissions.
Proper end-of-life care should begin before this time with advance care planning. A care plan should be developed that addresses preferred living arrangements and financial plans to access them, advance directives, surrogate decision-making, and wishes regarding resuscitation and other life-support measures. The plan must be adaptive as well, because goals of care will change as the disease progresses. Although patients at this stage of their disease frequently receive oncologic treatment, oncologists can be challenged to adequately address all of these advance care planning issues. The palliative care specialist is ideally suited to leading here if needed, and can guide the care plan to completion.
The ideal palliative care network to support patients with advanced cancer in the community would include medical team members from oncology, palliative care, and family practice, as well as professionals from nursing, social work, nutrition, rehabilitation, pharmacy, and chaplaincy. The majority of necessary services would be provided outside of a hospital or cancer center, and would be available to patients at home. An important contribution of the palliative care professional can be to help prioritize, coordinate, and mobilize the community resources that are available for patients, being mindful of individualized needs, preferences, and resources.
The benefits of palliative care programs with an emphasis on optimizing community care have been described in randomized controlled studies. Hughes et al studied the impact of a team-managed home-based primary care model involving a primary care manager, 24-hour contact support, pre-approval of hospital readmissions, and comprehensive team discharge planning. Terminally ill patients and their caregivers showed improvements in a number of QOL outcomes compared with a control group receiving customary Veteran's Administration and private sector care. However, these improvements came at a price, with the mean per-person cost being 12.1% higher in the intervention arm than in the control arm. Similarly, Zimmer and colleagues studied a team approach to home care for home-bound terminally ill elderly patients. Their team included a physician, nurse practitioner, and social worker, and the intervention included physician house calls, weekly conferences to assure coordinated care, and a 24-hour telephone service. Patients receiving the intervention had fewer hospitalizations, nursing home admissions, and outpatient visits, and more were able to die at home compared with controls. The overall costs were also lower for the intervention group.
Evidence suggests that most terminally ill patients prefer to die at home. Palliative care programs have been shown to reduce the need for acute care services and hospital admissions, and patients receiving home care or house calls are less likely to die in an acute care setting.
Psychosocial Support for Patients and Families
Patients and their caregivers carry a significant emotional burden. Up to 25% of patients with cancer meet criteria for clinical depression, and compared with patients who do not have mood disturbances, depressed cancer patients are undertreated and have shorter survival times. Clearly, mood disorders and other psychiatric problems impact more than just a patient's psychological state.
Unfortunately, detecting these problems can be difficult for oncologists, who generally receive limited training in formal psychiatric assessment. A further challenge is that changes in affect or personality can also result from anti-cancer therapies or the natural progression of cancer itself. Self-report mood screening inventories for patients and brief screening interviews or comprehensive symptom checklists can help to increase detection rates for problems such as depression, but such tools can lack specificity among patients with advanced cancer, who often present with a range of symptoms.
Palliative care professionals can help to identify patients at risk and appropriately guide referrals for formal psychiatric evaluation. Indeed, assessment and subsequent intervention is worthwhile. A recent review of randomized trials of palliative care interventions concluded that initiatives for patients and caregivers with respect to depression, anxiety, spiritual well-being, emotional well-being, life satisfaction, and self-esteem have in general proven beneficial with respect to symptom distress, QOL, satisfaction with care, and caregiver burden.
Conclusions and Future Directions
This article highlights the importance of palliative cancer care and the palliative care specialist to patients with incurable cancer. Oncology treatment programs have difficulty assessing and managing the many domains of care required by these patients, making collaboration across disciplines critical.
Because palliative care services are broad, it is important to engage professionals from many backgrounds when designing and implementing care plans. If only partial services are provided, only partial gains may be achieved among a patient's many needs.
Further randomized studies of palliative care interventions that use common efficacy endpoints and comparable treatment arms will help to evaluate the relative effectiveness of different models of care. Regular collaboration within such multidisciplinary interventions will also foster education and learning. This will enable oncologists to safely and efficiently manage many routine palliative care issues, allowing them to reserve referrals to palliative care specialists for more complicated issues beyond their capabilities. The cost-effectiveness of palliative care services also requires further study, to determine the relative impact of interventions on both hospital-based costs and overall healthcare costs.
Financial Disclosure: The authors have no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.
Acknowledgements: Dr. Dennis is supported by a Canadian Institutes of Health Research (CIHR) Fellowship Award. The authors are thankful for the support of the Michael and Karyn Goldstein Cancer Research Fund.