Home Is Where the Heart Is: Home-Based Palliative Care for Heart Failure

Evidence demonstrates that palliative care improves quality of life, reduces burdensome symptoms and increases the likelihood of a home death in patients with heart failure. Introduction: Persons with heart failure often experience dramatic and unpredictable exacerbations of chronic disease resulting in high acute healthcare use and poor quality of life. Healthcare systems are in search

Evidence demonstrates that palliative care improves quality of life, reduces burdensome symptoms and increases the likelihood of a home death in patients with heart failure.

Introduction:

Persons with heart failure often experience dramatic and unpredictable exacerbations of chronic disease resulting in high acute healthcare use and poor quality of life. Healthcare systems are in search of new models to deliver high-quality, patient and caregiver-centered end-of-life care, including helping patients die in their homes. Evidence demonstrates that palliative care improves quality of life, reduces burdensome symptoms and increases the likelihood of a home death in patients with heart failure. Achieving the ambitious goal of having patients die in their home will require sustained investment in physician training, the development of novel and innovative models of collaborative palliative care, and research to evaluate its efficacy.


When Elvis Presley penned the famous lyrics “Home Is Where the Heart Is” in 1962, he probably wasn’t thinking about where people would prefer to die, nor about cardiovascular disease in general. Ironically, he died suddenly of a drug-related heart attack at his home in 1977.

            Dying in the 21st century is different now; sudden death is no longer the norm. People are living longer, and populations are getting older. For the first time in history there are more people over the age of 65 than there are under the age of 15, and by 2030 the United States is expected to join several other nations in becoming a super-aged society with 20% of the population being over the age of 65 years.1 As populations age, the rising tide of medical complexity is translating into a shift from premature mortality to increasing end-of-life disability, especially for those suffering from chronic conditions.1 The contemporary road to death is often marked by dramatic and unpredictable exacerbations of these chronic diseases resulting in high acute healthcare use and poor quality of life.2 Nowhere is this more evident than in those suffering with heart failure.

Healthcare systems are in search of new models to deliver high-quality, patient-and caregiver-centered end-of-life care. In patients with heart failure, robust evidence from randomized trials demonstrate that palliative care improves quality of life and reduces burdensome symptoms such as pain and shortness of breath.3-5 Palliative care has emerged as such a promising approach that cardiovascular societies around the world now recommend its integration into the care of patients with heart failure at the time of diagnosis.4,6,7

One specific challenge in the care of patients with heart failure lies is helping them to die in their preferred location. When asked, nearly 90% of people, regardless of their diagnosis report a preference to die at home.8,9 Although as many as 20% these people may change their mind as their health status worsens, the large majority still prefer to die there either way. Death at home is so strongly recognized as part of providing a patient-centred approach to care that it is designated as a quality indicator for the delivery of end-of-life care.10,11

            It is these values that make the the findings of our recent study so disturbing.12 We examined a population-based cohort of 74,986 community-dwelling adults in Canada’s most populous province of Ontario who died with chronic heart failure. We found that an astounding 75% died in an acute care hospital. Compare these findings with the 20-45% of patients with cancer and other serious illnesses who die in hospital13,14 and it becomes apparent that there is a significant gap in access to high-quality end-of-life care for adults with heart failure.

            Thankfully, not all hope is lost. While only 47% of patients in the study received palliative care, its initiation was associated with a more than two-fold increase in the likelihood of death at home. Furthermore, we demonstrated that Ontario’s current model of palliative care delivery being used across the healthcare system – collaborative care between primary care and generalist and specialist palliative care – were associated with a higher likelihood of death at home. These findings suggest that scaling existing palliative care programs to increase access may improve end-of-life care for people dying with heart failure and help them to die at homes.

Achieving the ambitious goal of having patients die in their home is easier said than done. Patients with advanced heart failure suffer from debilitating symptoms, loss of functional capacity and substantial emotional distress. Our study excluded nearly 37,000 patients who were admitted to a nursing home in their last 2 years of their life. The necessecity to reside in a nursing home suggests substantial care needs for this chronically unwell population.12 Providing care in the home for community-dwelling patients with heart failure is often left to family caregivers who have to make significant personal and financial sacrifices to do so, and who may lack sufficient training in the care of seriously ill patients. 15

The next challenge facing healthcare systems is how to organize sustainable care that meets patients where they prefer to have their care, a goal set out in the Triple Aim by the Institute for Healthcare Improvement in the US.16 When it comes to patients prefering to die at home, healthcare system will need to find ways to scale existing interprofessional collaborative care models and then rigorously evaluate their ability to achieve it. What might this look like?

First, healthcare systems should focus on capacity building. This will require sustained efforts to train more specialist palliative care clinicians. Perhaps more importantly, significant investment in training all clinicians who care for patients with heart failure should be made to ensure that they possess the fundamental skills to provide generalist palliative care to alleviate and prevent suffering (such as symptom control, clarifying goals of care and supporting distressed family caregivers).17

Second, the “secret ingredients” of palliative care,18 and what constitutes a “palliative approach” to care19 is often apparent only to those who practice it. In order for health systems to effectively scale palliative care for patients with heart failure, further research should attempt to distill its key elements and the effects each element has on various patient- and policy-facing outcomes. 20

Finally, while healthcare systems scale our existing models of care, further focus needs to be placed on how to better support patients and their caregivers at home. In our study, we found that collaborative care between generalist and specialist palliative care improved the likelihood of death at home, especially when that care was provided in the home and in care transitions from hospital to home.12 Accessing specialty-level care may not be feasible (at least in the foreseeable future) in areas with restricted access to cardiology and palliative care, such as in remote rural regions. Promising results using telehealth have been seen in oncology21 and for patients with dementia.22 Future head-to-head trials will need to evaluate the efficacy of telehealth and remote monitoring compared with in-person care on important patient and caregiver outcomes.

            The care of patients with advanced heart failure is a vexing problem facing healthcare systems that aim to provide high quality end-of-life care to patients in alignment with their individual goals and preferences.23,24 To meet this enormous challenge, it will require sustained investment in physician and provider training, the scaling of existing effective models of collaborative palliative care, and research to evaluate its efficacy. If we ensure that palliative care is provided anywhere you are, we might be able to ensure that anywhere you are is home. 

Figure 1 – Summary of main study findings. Quinn et al conducted a population-based cohort of 74,986 community-dwelling adults in Ontario, Canada who died with chronic heart failure and measured the association between newly initiated palliative care and location of death.

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References

1-Lang JJ, Alam S, Cahill LE, et al. Global Burden of Disease Study trends for Canada from 1990 to 2016. CMAJ. 2018;190(44):E1296-E1304. doi:10.1503/cmaj.180698.

2-Zhang B, Nilsson ME, Prigerson HG. Factors important to patients’ quality of life at the end of life. Arch Intern Med. 2012;172(15):1133-1142. doi:10.1001/archinternmed.2012.2364.

3-Kavalieratos D, Corbelli J, Zhang D, et al. Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA. 2016;316(20):2104-2114. doi:10.1001/jama.2016.16840.

4-Kavalieratos D, Gelfman LP, Tycon LE, et al. Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities. J Am Coll Cardiol. 2017;70(15):1919-1930. doi:10.1016/j.jacc.2017.08.036.

5-Diop MS, Rudolph JL, Zimmerman KM, Richter MA, Skarf LM. Palliative Care Interventions for Patients with Heart Failure: A Systematic Review and Meta-Analysis. Journal of Palliative Medicine. 2016;20(1):jpm.2016.0330-jpm.2016.0392. doi:10.1089/jpm.2016.0330.

6-Braun LT, Grady KL, Kutner JS, et al. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association. Circulation. 2016;134(11):e198-e225. doi:10.1161/CIR.0000000000000438.

7-Howlett JG, Chan M, Ezekowitz JA, et al. The Canadian Cardiovascular Society Heart Failure Companion: Bridging Guidelines to Your Practice. Can J Cardiol. 2016;32(3):296-310. doi:10.1016/j.cjca.2015.06.019.

8-Pollock K. Is home always the best and preferred place of death? BMJ. 2015;351:h4855. doi:10.1136/bmj.h4855.

9-Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013;12(1):7. doi:10.1186/1472-684X-12-7.

10-De Roo ML, Leemans K, Claessen SJJ, et al. Quality indicators for palliative care: update of a systematic review. J Pain Symptom Manage. 2013;46(4):556-572. doi:10.1016/j.jpainsymman.2012.09.013.

11-Mizuno A, Miyashita M, Hayashi A, et al. Potential palliative care quality indicators in heart disease patients: A review of the literature. J Cardiol. 2017;70(4):335-341. doi:10.1016/j.jjcc.2017.02.010.

12-Quinn KL, Hsu AT, Smith G, et al. Association Between Palliative Care and Death at Home in Adults With Heart Failure. J Am Heart Assoc. 2020;9(5):e013844. doi:10.1161/JAHA.119.013844.

13-Teno JM, Gozalo P, Trivedi AN, et al. Site of Death, Place of Care, and Health Care Transitions Among US Medicare Beneficiaries, 2000-2015. JAMA. 2018;320(3):264-271. doi:10.1001/jama.2018.8981.

14-Tanuseputro P, Beach S, Chalifoux M, et al. Associations between physician home visits for the dying and place of death: A population-based retrospective cohort study. PLoS ONE. 2018;13(2):e0191322. doi:10.1371/journal.pone.0191322.

15-Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine, Schulz R, Eden J. Families Caring for an Aging America. Schulz R, Eden J, eds. November 2016. doi:10.17226/23606.

16-Heyland DK, Dodek P, Rocker G, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. Canadian Medical Association Journal. 2006;174(5):627-633. doi:10.1503/cmaj.050626.

17-Quill TE, Abernethy AP. Generalist plus specialist palliative care–creating a more sustainable model. N Engl J Med. 2013;368(13):1173-1175. doi:10.1056/NEJMp1215620.

18-Bischoff K, Yang E, Kojimoto G, et al. What We Do: Key Activities of an Outpatient Palliative Care Team at an Academic Cancer Center. Journal of Palliative Medicine. February 2018:jpm.2017.0441. doi:10.1089/jpm.2017.0441.

19-Sawatzky R, Porterfield P, Lee J, et al. Conceptual foundations of a palliative approach: a knowledge synthesis. BMC Palliat Care. January 2016:1-14. doi:10.1186/s12904-016-0076-9.

20-Warraich HJ, Meier DE. Serious-Illness Care 2.0 – Meeting the Needs of Patients with Heart Failure. N Engl J Med. 2019;380(26):2492-2494. doi:10.1056/NEJMp1900584.

21-Bakitas M, Lyons KD, Hegel MT, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302(7):741-749. doi:10.1001/jama.2009.1198.

22-Possin KL, Merrilees JJ, Dulaney S, et al. Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial. JAMA Intern Med. September 2019. doi:10.1001/jamainternmed.2019.4101.

23-Hargraves IG, Montori VM. Aligning Care With Patient Values and Priorities. JAMA Intern Med. October 2019. doi:10.1001/jamainternmed.2019.4230.

24-Tinetti ME, Naik AD, Dodson JA. Moving From Disease-Centered to Patient Goals-Directed Care for Patients With Multiple Chronic Conditions: Patient Value-Based Care. JAMA Cardiol. 2016;1(1):9-10. doi:10.1001/jamacardio.2015.0248.

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