Palliative Care
Compliance rules
1General information
Especially when a cancer disease is no longer curable or is progressive (in oncology / cancer therapy, one speaks of a "palliative" disease situation), burdens can arise that include physical symptoms such as pain, shortness of breath, nausea, etc., but also result in worries, fears and other hardships. In addition to treatment of the tumor disease, other support services are then often helpful and necessary. This approach of making disease-related stresses of all kinds more bearable, the people and structures required for this, and the support concept itself are referred to as "palliative medicine" or "palliative care."
This form of support often requires the involvement of many people and professional groups, for example physicians from different disciplines (`interdisciplinarity`), as well as nurses, psychooncologists, social service staff, physiotherapists, pastors, and many more. (`multiprofessionality`). In addition, these situations require round-the-clock accessibility not only in the hospital but also at home and, in addition to telephone consultation, the specific offer of home visits. Specialized palliative care teams and facilities, with their additional knowledge and capabilities, are particularly helpful, in addition to the physicians and services already involved, when burdens are multi-layered (complex), the expertise of many professional groups is needed, or home visits are also required at night or on weekends. This form of specialized palliative care can be involved temporarily or permanently in parallel with oncological treatment and, if desired, can also take over treatment in particularly complex situations.
1.1What is the Specialized Palliative Care facility?
SAPV teams: For support at home (or in nursing facilities), there are so-called SAPV teams (SAPV = Specialized Outpatient Palliative Care), which offer round-the-clock counseling, therapeutic skills and home visits.
Palliative services: In hospitals, there are multiprofessional palliative teams (so-called `palliative services`), which provide medical, nursing, social service and psycho-oncological care to patients in particular need of support, and palliative medicine outpatient clinics, which are primarily active in an advisory capacity for mobile patients.
Palliative care units: are facilities and points of contact for particularly comprehensive, inpatient treatment when symptoms and stresses cannot be adequately managed elsewhere (and elsewhere) - they are not facilities that would be available only for end-of-life treatment.
Hospices: are care facilities in which people at the end of life are accompanied and cared for by specially qualified multiprofessional teams in a homelike atmosphere outside a hospital. The rooms of the guests of a hospice are often so spacious that relatives can spend a lot of time there and also stay overnight. In most cases, hospice facilities offer more room for individuality and privacy than hospitals. Dedicated volunteers also support the work in the hospice in a variety of ways.
Outpatient hospice services: Volunteers support patients and relatives through their work in outpatient hospice services in addition to the full-time treatment teams at home, but also in the hospital. The volunteers are specially qualified, contribute in very different ways and provide personal support.
1.2When should palliative care support be involved?
In the meantime, many studies have shown that the earlier this support is offered, the more effective it is [1, 2, 3]. At the beginning of an incurable disease situation, it is usually a matter of no more than developing a "Plan B" for the event that tumor therapy no longer works. It can be a relief to know that there is round-the-clock availability for questions and problems, that good symptom relief is possible, that support is available for questions about the course of the disease, and that one's own wishes and concerns can be recorded with regard to the further course of the disease and arrangements can be made for the event of a crisis. Therefore, the term palliative care should be understood in the sense of early, broad-based support, and not only in the sense of treatment exclusively at the end of life or end-of-life care.
2Good to know
2.1Is palliative care support prescribable?
Family physicians and treating specialists (e.g., oncologists) can assess the need for additional support and involve the relevant competent palliative services and facilities and prescribe their involvement in the outpatient situation. Once the prescription has been approved, there are no additional costs for the patients.
2.2Where can I find palliative care support?
Palliative care support is now available throughout Germany with outpatient and inpatient facilities. All existing specialized services and palliative care facilities in Germany can be found at https://www.wegweiser-hospiz-palliativmedizin.de/.
2.3What is available in outpatient palliative care?
With the appropriate support and expertise, many things can be organized at home that at first glance seem almost inconceivable: nutrition and fluid administration via the vein (via port; parenteral nutrition), continuation of antibiotic therapy, continuous pain therapy via patient-controlled pumps (PCA pump), and much more. It is therefore advisable to discuss your own wishes for further treatment at home with the attending physician and to find out about the relevant options at an early stage.
2.4Are there support services for my loved ones as well?
There are also various support offers for relatives, be it in the context of social service and socio-legal counseling, psychological support by psychooncologists or psychotherapists in private practice, support by voluntary hospice helpers (§39a SBG V), and much more.
3Tips and tricks
Discussing a "Plan B" or even determining the course of action in the event of conceivable problems and crises is not easy for patients and for relatives, but also for all those working in therapy. Many studies and the experience in oncology and palliative medicine show that after the necessary overcoming, relief almost always prevails with regard to the clarifications. In most cases, these arrangements are the best way to ensure that unwanted courses and measures are omitted and only wanted measures take place [4, 5, 6, 7]. As a patient and family member, please ask your family doctor and/or oncologist about palliative medical support and necessary arrangements on your own initiative if this has not yet been done by them despite the incurable disease situation [8].
Agreements on how to proceed in the event of problems and crises can usefully be written down in the form of living wills. These are all the more helpful for the attending physicians, the more concretely they refer to the decision-making situations conceivable in the case of the illness. An even more important form of written power of attorney is the so-called health care proxy. It specifies which person is to legally express the patient's will in a specific decision-making situation, for example if a patient cannot be questioned clearly enough in the case of high fever or other clouding of consciousness. A commonly used form nationwide can be found here, https://www.justiz.bayern.de/service/juristisches-lexikon/. Notarization is not required for these two writings, living will and health care proxy. It makes sense, however, for the attending primary care physician/oncologist/palliative care physician to help with the wording and concretization. The term "advance care planning" was coined for this concept of early agreements based on the values of the patients themselves.
4Further links and information
Guide to hospice and palliative care: https://www.wegweiser-hospiz-palliativmedizin.de/
S3 Guideline Palliative Care for Patients with Noncurable Cancer: http://leitlinienprogrammonkologie.de/Palliativmedizin.80.0.html
DKFZ Cancer Information Service (KID): https://www.krebsinformationsdienst.de/wegweiser/adressen/palliativ.php
5References
Haun MW, Estel S, Rücker G et al: Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev 2017; 6:CD011129. DOI:10.1002/14651858.CD011129.pub2
Kavalieratos D, Corbelli J, Zhang D et al: Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA. 316: 2104-2114, 2016. DOI:10.1001/jama.2016.16840
Gaertner J, Siemens W, Meerpohl JJ et al: Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis. BMJ 357: j2925, 2017. DOI:10.1136/bmj.j2925
Mack JW, Cronin A, Keating NL et al: Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol 30: 4387-4395, 2012. DOI:10.1200/JCO.2012.43.6055
Mack J, Paulik ME, Viswanath K, Prigerson HG: Racial disparities in the outcomes of communication on medical care received near death. Arch Intern Med 170: 1533-1540, 2010. DOI:10.1001/archinternmed.2010.322
Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG: End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 28: 1203-1208, 2010. DOI:10.1200/JCO.2009.25.4672
Oncology guideline program (Dt. Krebsgesellschaft, Dt. Krebshilfe, AWMF): palliative care for patients with a non-curable cancer, long version 1.0, 2015, AWMF Reg.No: 128/001OL, https://www.leitlinienprogramm-onkologie.de/leitlinien/palliativmedizin (accessed Feb. 10, 2019).
Keating NL, Landrum MB, Rogers SO Jr et al: Physician Factors Associated With Discussions About End-of-Life Care. Cancer 116: 998-1006, 2010. DOI:10.1002/cncr.24761
6Gender
For better readability, masculine and feminine formulations are not used simultaneously. The gender terms used in this text represent all gender forms.
8Disclosure of Potential Conflicts of Interest
according to the rules of the supporting professional societies
