56.2 Palliative and end-of-life care in subjects with cardiovascular disease

Palliative care (PC) is holistic care that encompasses the prevention, assessment, and treatment of symptoms, and addresses the psychological, social, and spiritual problems of ill people and their relatives with the goal of improving quality of life and, finally, of dying. It is not an alternative to, but rather a supplement for, curative treatment, making symptom alleviation and quality of life equally important goals for management and care as curing the underlying disease along its whole trajectory. The SENSE model describes the elements of PC: Symptom management, dEcision making, Networking, Support, and End-of-life (EoL) care. In terms of Symptom management, people living with advanced heart disease, particularly heart failure (HF), report many symptoms (including pain, breathlessness, tiredness, depression, anxiety, and dry mouth) that can be effectively alleviated using PC. Many of these symptoms, almost constantly present in HF patients, are usually not specifically targeted by medical interventions. Empowerment in dEcision making requires sensitive, in-depth communication. The PC perspective could help people living with cardiovascular disease to bring their personal perspective to medical decision making throughout, guiding reflections according to their personal values and what really matters for their individual lives and living, making them better prepared for active participation in defining their own goals for treatment and care. The management would be defined together with the cardiologist responsible for their care or another member of the heart team, optimally in the form of shared decision making. PC can additionally, when appropriate, help in preparedness for anticipatory death. If appropriate and wished for, PC specialists can help in the process of advance care planning (ACP), which defines individual health-related goals and preferences for future care and treatment. Apart from general considerations regarding life-sustaining therapies and interventions at the EoL, a number of specific issues, such as the modification of implantable cardioverter defibrillator activity or the withdrawal of a ventricular assist device, should be addressed if appropriate. The outcome of the ACP process can lead to the drawing up of advance directives (AD), a living will, the Physician Orders for Life-Sustaining Treatment (POLST), or another formal written document filled out by the patients themselves (similarly to the case of AD) or their physician at the patients’ behest (as in the case of POLST), informing relatives about preferred care and management (an advance statement), indicating the formal representative for medical decision making (a proxy), or just becoming prepared for in-the-moment decision making. Any of these ways of expressing their will helps to ensure that the care provided will correspond to the patients’ individual goals and prevent unwished therapies (which are usually futile) when they become incompetent for decision making or unable to express their will. If the expected EoL is openly communicated, quality of life may improve for patients and their relatives and the care received during dying might become more concordant with that which is expected, resulting in better satisfaction with care. Networking is PC facilitating communication among all of those involved in care and can help to provide person-centred care. Support to those living with a disease and to their relatives can help to cope with the limitations caused by health problems and live as full and active a life as possible. In terms of care at the EoL, even if death is imminently approaching and cardiological management cannot be further optimized, a lot can still be done to improve the quality of dying. When appropriately recognized and communicated, the very last phase of life gives all involved the opportunity to see to unfinished business and prepare to bid farewell to the person who will die. This helps to close out their life with dignity and to begin the process of bereavement for the family. The greatest challenge in providing PC still lies in recognizing unmet needs and in starting the implementation of PC principles or involving a PC team in a timely manner rather than in the very last days or hours of life. Modern PC manages or prevents suffering in people with advanced diseases, independent of diagnosis and prognosis, and cares for their relatives. It can be provided additionally to disease-specific management as parallel care, or sometimes as the main care pathway, especially in people close to death, in the form of EoL care/care for the dying. Parallel PC care should be needs driven; EoL care and care for the dying can additionally be prognosis driven. Limiting the provision of PC solely to those who have a high risk of death or who are imminently dying deprives most people living with heart disease of access to PC which could improve their quality of life. In the majority of cardiological patients, PC can/should be delivered by the cardio team that has been used to treating the person to date and who applies the general PC rules (mainly symptom and distress assessment and management or in-depth communication). The PC specialist should ensure consultations in the case of difficult/resistant problems, and only rarely take the lead in treatment, if needed. PC acknowledges four dimensions influencing a person’s quality of life: physical, psychological/emotional, spiritual, and social. Each of them needs to be addressed effectively, sometimes requiring the involvement of a multidisciplinary team. A PC team can also provide important support to the treatment team in seeking optimal decisions if complex management-related ethical issues evolve.