Key words
palliative care - neurological diseases - healthcare structures
This article presents an overview of current palliative care of patients suffering
from neurological diseases. After a brief introduction to the epidemiological figures
on the need for palliative care vs. the care reality in these patient groups in Germany,
typical palliative care symptoms and needs as well as the extent to which they are
addressed are described. The healthcare structures in which patients in need of neuropalliative
care are currently cared for in Germany are described in detail as well as the possibilities
for integrating existing palliative and hospice care structures into their care. After
an overview of research results on innovative neuropalliative care services, considerations
are presented on how neuropalliative care in Germany could be improved.
Palliative Care of Neurological Patients: Need vs. Reality
Palliative Care of Neurological Patients: Need vs. Reality
In a survey [1], the participating German chief physicians of neurological institutions estimated
that an average of 10% of their neurological patients had palliative care needs as
defined by the World Health Organization (WHO) [2], particularly patients with the following diagnoses: brain metastases, glioblastoma
and other primary brain tumors; amyotrophic lateral sclerosis (ALS), idiopathic or
atypical Parkinson’s syndrome incl. multiple system atrophy (MSA) and corticobasal
degeneration or Huntington’s disease. The need for palliative care was also noted
in patients with dementia syndromes, stroke, multiple sclerosis (MS) and traumatic
brain injury. 12.1% of the chief physicians surveyed and an average of 1.3 physicians
and 2.2 nurses of the respective institution had received additional training in palliative
care with a view toward implementing palliative aspects into neurological treatment.
According to the annual hospice and palliative care survey (HOPE), in 2015, 74.4–88.6%
of the patients cared for in palliative and hospice care structures were reported
to suffer from malignant neoplasms. 0–3.6% of the patients cared for in palliative
and hospice care structures suffered from a primary disease of the central nervous
system [3], although the prevalence of such diagnoses suggests a much greater scope of care.
The neurological chief physicians surveyed [1] cited in most cases cardiovascular diseases, infections, and underlying malignant
diseases as the cause of death in their patients, whereas underlying neurological
diseases were regarded as uncommon (9%). According to the Federal Statistics Office
[4], of the total 868,356 deaths in Germany in 2014, the 10 most frequent causes of
death included: heart disease (chronic ischemic heart disease (8%), acute myocardial
infarct (5.5%), cardiac insufficiency (5.1%), hypertensive cardiac disease (2.6%));
diseases of the lung (other chronic obstructive lung disease (3.1%)), malignant diseases
(lung and bronchial cancer (5.2%), breast cancer (2.1%), colon cancer (1.9%)); and
neurological pathologies such as unspecified dementia (2.9%) or stroke not specified
as hemorrhage or infarction (1.9%). The literature also indicates that numerous neurological
diseases shorten life expectancy due to their fatal course (e. g., paralysis of the
respiratory muscules in neuromuscular diseases) or accompanying complications (e. g.,
accidents, falls) that can cause premature death [5]
[6]
[7].
Palliative Care Symptoms and Needs of Patients with Neurological Diseases
Palliative Care Symptoms and Needs of Patients with Neurological Diseases
Many neurological patients, such as those with primary brain tumors, advanced MS,
ALS, and idiopathic or atypical Parkinson’s disease, suffer from debilitating symptoms
and participation disturbances at the physical, psychosocial, and spiritual level
and are therefore predestined for palliative care [2]
[8]
[9]
[10]
[11]
[12]
[13]
[14]
[15]
[16]
[17]
[18]
[19]. The symptoms of neurologically ill patients are similar to those of oncology patients,
such as increased incidence of pain, fatigue, shortness of breath, and constipation,
even though the severity and frequency may differ. Other symptoms specific to diseases
of the peripheral or central nervous systems may also be present, e. g., the occurrence
of (painful) spasticity, paralyses, vegetative disorders, dysphagia, speech impairments,
epileptic seizures, myclonus, and neuropsychological and neuropsychiatric impairments.
The high intensity of nursing care and family caregiver burden as well as ethical
and psychosocial issues are particularly challenging in the care of these patients
[8]
[9]
[10]
[11]
[12]
[13]
[14]
[15]
[16]
[17]
[18]
[–]
[20]. Patients with primary brain tumors, for example, were shown to suffer much less
frequently from the typical palliative care symptoms included in the HOPE palliative
care outcome mesauremnet, such as bodily pain, nausea, vomiting, constipation, and
lack of appetite, than other patients requiring palliative care. In contrast, scores
were especially high in the categories “Needs assistance with activities of daily
life,” “Disorientation/confusion,” “Excessive strain on family/environment,” along
with the high intensity of nursing care [20]. As glioblastoma progresses, palliative care symptoms, the need for support, fears
of family members, and the subjective perception that life is no longer worth living
increase [17]. Utilizing HOPE as outcome measurement [10] obvious differences between oncology patients and those with severe MS could be
identified in terms of: symptom burden, intensity of nursing care, degree of disability,
type of medication and type of measures carried out over the course of the disease.
The protracted course of the disease led to more comorbidities. Diseases of the psyche,
the urogenital tract and the musculoskeletal system more frequently occurred in patients
with severe MS than in oncology patients. Furthermore, more patients suffering from
severe MS [10] lived in nursing homes (21%) than oncology patients (10%). In ALS patients, symptoms
that result from the unrelenting progressive paresis of the various muscle groups
predominate. They include dysphagia with sialorrhea, risk of aspiration and the question
of placing a percutaneous endoscopic gastrostomy (PEG) tube, limited ability to speak
and the need for alternative forms of communication, insufficiency of the respiratory
muscles with resulting shortness of breath and anxiety and the issue of drug therapy
and/or ventilation and secretion management to alleviate these symptoms. All these
examples illustrate problems that rarely occur in this form and constellation in oncology
patients with palliative care needs [13]
[14]
[15]. In patients with idiopathic or atypical Parkinson’s disease, not only do the extrapyramidal
motor symptoms play a special role in addition to the classic palliative care symptoms
like pain. Other issues emerge, such as the administration of Parkinson’s medication
in the advanced disease stages (dysphagia, fluctuating drug responses, drug-induced
delirium) and challenges from the development of Parkinson’s-associated dementia [11]
[12]
[13].
Discrepancy Between the Demand for and Implementation of Palliative and Hospice Care
for Patients with Neurological Diseases
Discrepancy Between the Demand for and Implementation of Palliative and Hospice Care
for Patients with Neurological Diseases
Although the examples cited do illustrate that many neurological patients need palliative
and hospice care, the terms palliative and hospice are currently associated mainly
with dying cancer patients [21]
[21]
[23]. Additionally, some healthcare professionals believe that neurological patients
would not in any way benefit from palliative and hospice care and would not die from
their neurological illness [21]
[24]
[25]. This assumption may be one reason why so few patients with neurological diseases
are treated in palliative and hospice care structures [3]. Another reason may be that the structures of the modern palliative and hospice
care movement developed primarily to care for oncology patients, so fewer patients
with primary neurological diseases and their special and often difficult symptom constellations
are represented [26]. Another reason it may be difficult to care for neurological patients in palliative
and hospice care structures is that neurological diseases often have a chronic course
with longer disease trajectories than is usually the case with many oncology patients.
This occasionally makes it more difficult to recognize end-of-life signs [27].
Palliative and hospice care for patients with neurological diseases requires special
training with respect to the specific symptoms and disease courses. Healthcare professionals
must acquire the appropriate expertise, and structural modifications to palliative
and hospice care structures may be required as well.
To Date, in Which Existing Healthcare Structures Have Neurological Patients in Need
of Palliative Care Been Treated in Germany?
To Date, in Which Existing Healthcare Structures Have Neurological Patients in Need
of Palliative Care Been Treated in Germany?
Neurological structures
In the Federal Republic of Germany there are a total of 1 717 practicing neurologists
(office-based) to treat the wide variety of acute and chronic neurological disorders.
Of those physicians, 1 299 are independent and 418 on staff. In addition, 1 931 practicing
“Nervenärzte” (a combined medical specialization in neurology and psychiatry which
cannot be obtained in this form any longer) work exclusively with outpatients. Inpatient
treatment is available at 358 acute care neurology clinics, 143 neurology rehabilitation
clinics, 115 specialist clinics, and 43 university hospitals with additional special
outpatient clinics for numerous and even rare neurological diseases (source: German
Association for Neurology (DGN), [28]). In this system, neurological patients receive medical diagnostics and treatment
according to high standards and according to guidelines. Difficulties in neurological
care often emerge in case of advanced stages of neurological diseases when these patients
are hardly able to visit their attending physicians, outpatient clinics and hospitals
and are forced to rely on care at home or in a nursing home. Few neurologists make
house calls, if at all most likely in nursing homes, although precise data is lacking.
Even supplementary at-home co-therapy from physical, occupational and speech therapists
is often difficult to organize, and not just in rural areas. This is especially true
for psychotherapeutic support.
Examples of neuropalliative care options in Germany
In Germany, some regional and some national structures that address neurological and
palliative care concerns have been developed for some progressive neurological diseases.
One of them is the multiprofessional palliative care service of the Marianne Strauss
Clinic in Kempfenhausen (specialist clinic for MS), which provides care to patients
in advanced stages of MS in accordance with the specifications of the Bavarian Professional
Program for Palliative Care in Hospitals (EDSS >8) [10]. After a pilot phase [29] in cooperation with the German Multiple Sclerosis Society (DMSG), there is now a
national telephone hotline for severely affected MS patients and their families to
answer questions on palliative and hospice care and its structures. The telephone
consulting hotline represents a low-threshold service that is also available to healthcare
providers. The information given by the hotline helps to spread the palliative and
hospice care concept within a patient group that until now has had little contact
with the palliative and hospice care structures. This service helps to facilitate
that contact. The established, closely cooperating ALS centers in Germany aim to improve
clinical care of ALS patients struggling with numerous palliative care symptoms and
issues. The “Ambulanzpartner” [Outpatient Partner] Project has an important role in
this endeavor [14]
[30]. Through case management linked to an Internet-based management portal, Ambulanzpartner
supplies ALS patients with adequate resources of every type (e. g., mobility aids,
orthoses, communication aids). This assistance is especially important with regard
to symptomatic and palliative care of these patients experiencing a progressive irreversible
loss of muscle function [14]
[30]. The coordinative assistance through case management relieves patients and families,
affording them time to cope with the profound changes in their living conditions.
The Cologne Parkinson’s Network is one example of integrated neurological care of
complex Parkinson’s patients. Patients receive coordinated treatment from a movement
disorder specialist of the University Hospital of Cologne, their attending neurologist,
and a Parkinson’s nurse who also makes house calls. One important aspect that the
current model does not include yet, however, is providing palliative care advice e. g.,
with respect to advance care planning or palliative care symptomatic treatment in
rapidly progressing disease courses.
A few neurological clinics offer “palliative beds” reserved for inpatient care of
the most seriously ill neurological patients. According to the survey previously cited
[1], approx. 8% of the participants indicated having an average of 4.4 “palliative beds”
available. Outpatient care of neurological patients is made more difficult when patients
are no longer able to visit their neurologists and must rely more on their general
practitioners. This is a major challenge for general practitioners in light of the
complexity of serious neurological disorders. With respect to questions on palliative
and hospice care they can find support in palliative and hospice care structures,
which can basically be used by all patients with palliative care needs regardless
of their diagnosis [2]. Yet the reality is markedly different: Currently only up to 3.6% of patients receiving
care in these facilities have a primary neurologic disorder [3].
Possibilities of complementary integration of the palliative and hospice care approach
and its structures in the care of neurological patients with palliative care needs
Palliative care is not strictly confined to the dying, but is also appropriate earlier
in the disease course, including in connection with disease-modifying therapies. This
early integration of palliative care is expressly recommended by the WHO and the American
Society for Clinical Oncology (ASCO). Introducing palliative care early on in the
course of a progressive, life-threatening disease offers the best possible symptom
control, advance care planning, and ultimately well-prepared transition into strictly
palliative care. In oncology patients with a variety of disease entities, it was shown
that early integration of palliative care improved quality of life [31]
[32]
[33] and even extended survival [31]. For oncology patients, standard operating procedures (SOP) [34] define for different disease entities when palliative care should be introduced.
Such SOP do not yet exist for neurological diseases, making it difficult for neurologists
– unlike oncologists – to decide when to start palliative care in the treatment process.
Depending on the clinical picture, a palliative care approach for neurologically diseased
can be envisioned at the time of diagnosis (e. g., ALS, glioblastoma) or once prognostically
poor symptoms appear, such as dysphagia e. g., with (atypical) Parkinson’s disease
[27] or after a defined degree of disability (e. g., MS) has been reached [35]. But it is currently unclear whether the duration of a neurological disease alone
can be a potential parameter. SOP, that remain to be developed for neurological disorders,
would help to consistently integrate the palliative care approach in the care of these
patients. This does not in any case need palliative care specialists. Approx. 10%
of patients with palliative care needs require specialized palliative care (SPC).
The remaining 90% of patients with palliative care needs can be treated through general
palliative care (GPC) (see [Table 1]) [36]). The networking and integration of interfaces in the cross-sector concepts play
an important role in both GPC and SPC. Palliative and hospice care structures for
both GPC and SPC developed very differently in Germany and are heterogeneous. In spite
of substantial progress over recent years, universally consistent and qualitatively
equivalent palliative healthcare and support services are still lacking. To acquire
GPC skills, discipline-specific curricula based on the criteria of the German Society
for Palliative Medicine (DGP) and the German Hospice and Palliative Association (DHPV)
are available for the major occupational groups as well as volunteer caregivers. Specialist
physicians can complete additional training in palliative care. Once they have acquired
the skills in GPC, the different occupational groups are able to treat patients and
their families according to the principles of palliative care in their respective
fields. However, there is still no uniformly defined healthcare structure in GPC.
Universal contractual and regulatory specifications are also lacking. Usually symptoms
that require treatment, individual aspects of palliative care nursing, and psychosocial
aspects are the areas of focus. Patients requiring GPC treatment often need a low
to medium level of palliative care. SPC requires a qualified multi-professional palliative
care team available around the clock. These teams work in a variety of care sectors
(inpatient, outpatient, semi-residential). SPC is characterized by a particularly
high and complex need for care. Specialized outpatient palliative care (SOPC) is rendered
to patients whose complex symptoms require particularly extensive palliative care
(medical/nursing), and rendering that care requires specific palliative care skills
(medical/nursing) and/or special coordination services. The situation is complex if
at least one of the following criteria is present: severe pain, serious neurological/psychiatric/psychic
symptoms, threatening and agonizing respiratory, cardiac, gastrointestinal or urogenital
symptoms or (ex)ulcerating wounds or tumors.
Table 1 Forms of general and specialized palliative care [35].
|
GPC (healthcare professionals working in GPC do not have their main focus in palliative
care)
|
Treatment of palliative care patients who require a low to medium level of palliative
care.
|
|
General outpatient palliative care (GOPC)
|
-
Provided by physicians and nurses experienced and qualified in palliative care (e. g.,
general practitioners/specialists/nurses with appropriate training in palliative care
and nursing)
-
Cooperation with other service providers of outpatient palliative care, e. g., hospice
care services
-
Basic requirements: Qualifications, house calls, reachable around-the-clock
|
|
GOPC for inpatient elder care
|
|
|
General inpatient palliative care
|
-
Is rendered in regular wards and units in hospitals to patients that do not require
specialized palliative care in a palliative care ward. Palliative care (medical/nursing)
is provided by appropriately trained and qualified personnel in the given department.
-
These teams are often supported by a consulting palliative care service that is usually
attached to a palliative care ward
|
|
SPC (healthcare professionals working in SPC have their main focus in palliative care)
|
Care of palliative care patients with particularly complex and high care needs.
|
|
Specialized outpatient palliative care (SOPC)
|
-
Service regulated according to social law
-
Rendered by multiprofessional team especially trained in palliative care (medical/nursing)
-
Outpatient care of particularly complex palliative care patients with complex symptoms
and/or special need for coordination services
-
Legal entitlement if prerequisites are met (valid also for patients in nursing homes
and integration assistance facilities (per § 37b SGB V)).
-
Physician’s prescription and approval by insurer required
-
Supplementary service to GPC and standard care.
|
|
Specialized inpatient palliative care
|
-
Rendered on special wards and care units (palliative care wards, inpatient hospices)
or by consulting palliative care services that support the teams on the non-palliative
care wards in clinics
-
Personnel working here are appropriately qualified in palliative care (medical/nursing)
and work primarily in palliative care
|
|
Consulting palliative care services
|
-
Specialized, multiprofessional palliative care teams (palliative care nurses and palliative
care physicians, at a minimum)
-
Often attached to palliative care wards
-
Provide specialized palliative care consulting across disciplines in the hospital
(e. g., symptom treatment, early integration of palliative care, end-of-life care)
|
|
Palliative care wards
|
-
Specialized facilities integrated into a hospital to care for patients with incurable,
life-threatening diseases whose serious symptoms cannot be adequately treated elsewhere
-
Goal is to improve or stabilize the disease situation and ultimately discharge, preferably
to home
-
If discharge is not possible, render end-of-life support to patient and provide appropriate
counseling to families, relatives, and friends.
-
Qualified palliative care physicians and nurses are available around the clock.
|
|
Assigned to GPC and SPC
|
|
|
Outpatient hospice care services
|
-
Volunteer groups of trained hospice care volunteers
-
Coordination by a (full-time) hospice care coordinator
-
Support and daily help services for serious, incurable diseases and consulting on
all matters related to palliative and hospice care
-
Psychosocial support during the dying and grief process.
-
Often assumption of coordination and management tasks in the regional network
|
|
Inpatient hospices
|
-
Separate facilities, independent of hospitals and nursing homes, for the critically
ill who live and are cared for there until death when at-home palliative care is no
longer possible and hospital treatment is not necessary.
-
Nursing care by nurses specialized in palliative care.
-
Medical care by general practitioners and/or general or specialized palliative care
physicians.
-
Volunteer hospice care support is also a basic component of hospice care.
|
Financing Palliative and Hospice Care
Financing Palliative and Hospice Care
Financing GPC, SPC, and hospice care is regulated in different ways across the nation.
The most important basis for financing outpatient SPC is legal entitlement (SOPC §§
37b and 132d SGBV) as long as those affected meet the prerequisites previously described.
There is no nationally uniform financing framework and therefore the level of remuneration
and the underlying scope of services are regulated differently at the state level.
It should be noted that the SOPC service provider must be an autonomous legal entity
to be able to enter into the corresponding healthcare contracts. SOPC is not within
the scope of services that can be charged by an attending physician or a nursing service.
The service providers (so-called SOPC teams or palliative care teams) must conclude
separate healthcare contracts with the insurers and separately negotiate the scope
of services and the level of remuneration. In some states (e. g., North Rhine Westphalia),
this task is handled for the physicians by the regional Association of Statutory Health
Insurance Physicians or separate SOPC associations (e. g., Hessen). The scope of services
and the contract terms are essentially based on the SOPC Directive of the Joint Federal
Committee (GBA) [37] and the current recommendations of the National Association of Statutory Health
Insurance Funds (GKV-Spitzenverband) for specialized outpatient palliative care [38].
Inpatient SPC is financed within the framework of DRG hospital financing via a separate
OPS for palliative care wards nationwide or through per diem nursing charges for the
individual hospital for a so-called “special facility.” According to the new Hospice
and Palliative Care Law (HPG), each hospital can choose one of the 2 financing options,
whereby recognition as a special facility must be renewed annually. According to the
HPG [39], consulting palliative care services will be DRG-financed in future. This will not
be possible nationwide until 2019 and until that time each hospital must individually
negotiate payments.
There is currently no financial framework for either inpatient or outpatient GPC.
Different regional models have developed over recent years and in individual states
they are universally available. These include the QPA (qualified palliative care physician)
contracts and the palliative care contract in North Rhine Westphalia. Several changes
will result in the wake of the implementation of the HPG in the coming years, and
it remains to be seen whether uniform healthcare structures comparable with SPC will
emerge. The expected modifications to the Federal Collective Agreement will be crucial
for outpatient care by physicians, as will changes to the German Federal Joint Committee
guidelines for outpatient nursing care provided in the home. GPC will be developed
and financed primarily as an integrative component of the existing care structures.
The extent to which separate characteristics of process and structural quality will
be defined as a financing prerequisite in care contracts and legal requirements should
be noted. The corresponding contract structures in North Rhine Westphalia are examples.
Many GPC and SPC contracts require a cooperation with outpatient hospice care services
as a structural prerequisite for invoicing of services. It should be noted that outpatient
hospice care work is funded by insurers separately from the financing of services
for out- and inpatient healthcare. § 39a SGB V (Social Code Book V) and the corresponding
framework agreement [40] are the basis for this. Funding of hospice care services is handled annually in
a regulated procedure and ensures payment for the material costs necessary for volunteer
end-of-life care and the personnel costs for coordination. In the new HPG, hospice
care services can also include end-of-life care in hospitals in their subsidy application.
To this end, many hospice care services enter into appropriate cooperation agreements
in order to regulate the substantive cooperation ([Table 1]).
The New Act to Improve Hospice and Palliative Care in Germany (HPG)
The New Act to Improve Hospice and Palliative Care in Germany (HPG)
The new HPG [39] that took effect on December 8, 2015 aims to strengthen hospice and palliative care
in Germany. The law defines deadlines by which the individual provisions must be implemented.
The law stipulates the following main provisions: 1) palliative care is an explicit
component of standard care in the statutory health insurance; 2) concrete form will
be given to the individual palliative care benefits for home nursing services; 3)
specialized outpatient palliative care in rural areas will be expanded; 4) financial
basis for inpatient child and adult hospices will be improved by raising the per diem
with insurance funds assuming 95% of the associated costs; 5) financial position of
outpatient hospice care services will be improved through adequate consideration of
personnel and material costs. The focus of hospice care services with respect to family
grief counseling and the work in nursing homes will be strengthened; furthermore,
hospitals will be entitled to commission outpatient hospice care services. 6) Terminal
care will become an explicit component of the social long-term care insurance's mandate;
7) for separate palliative care wards, hospital-specific fees can be agreed with the
third-party payers; 8) new billing options will be created for the inpatient consulting
palliative care service. Under the new OPS code 8–98 h, such care can now be billed
as “specialized palliative combination therapy by a consulting palliative care service.”
What is unique is that now the time actually spent can be billed, which was not previously
possible (according to the previous specifications, only a portion of the service
actually rendered was reimbursed, for example, approx. 30% to the University Hospital
of Cologne). 9) Advance care planning with individual consulting on hospice and palliative
care issues will be funded.
Neuropalliative Care Approaches and Concepts in the Literature
Neuropalliative Care Approaches and Concepts in the Literature
Approximately 70% of neurological diseases have a chronic course often with progressive
impairments. These diseases are known as long-term neurological conditions (LTNC)
and include e. g., the following: MS, idiopathic and atypical Parkinson’s syndrome,
ALS, and Huntington’s disease. Treating these patients mainly involve symptom control
stabilization of neurological status and maintaining quality of life [41]
[42]. These treatment goals illustrate how important it is for different medical disciplines
such as neurology, rehabilitative medicine, and palliative care to work together in
order to holistically care for these incurably ill patients. In Great Britain it was
demonstrated that complementary care concepts improve long-term results for patients
and significantly reduce treatment costs [43]
[44]. Whereas the term “neuropalliative rehabilitation” is becoming established internationally
[45]
[46]
[47], in Germany this is not yet the case. Here, palliative care is often “reserved”
for end-of-life care, especially for oncological patients [21]. In Great Britain, the “End of life care in long term neurological conditions –
a framework for implementation” (NEoLCP) [48]) specifically recommends a multidisciplinary approach to care. This approach makes
clear how the expertise of the various disciplines can be applied in an integrated
way: Neurologists and neurorehabilitation physicians have extensive current knowledge
on the specific characteristics of neurological diseases, including disease-specific
treatment options and the associated odds and risks. They understand the possibilities
of multidisciplinary rehabilitation programs and how they can be used to stabilize
and improve neurological functions. The palliative care approach for these diseases
particularly focuses on improving quality of life by relieving debilitating symptoms
from a psychosocial, spiritual medical, and nursing standpoint. It addresses advanced
care planning to be put in place as early as possible in the course of the disease,
changes in treatment goals or end-of-life decisions. It is especially important to
include family members, one part of the so-called “unit of care”, in these proceses
because communication is often limited in neurological patients and family members
themselves often require a good deal of support and relief. This need results from
the chronicity of many neurological diseases, which may be associated with changes
in cognition, emotionality, and personality, thus placing extraordinary physical and
emotional strain not only on the patients but also the caregiving family members.
Palliative care typically involves a multidisciplinary team supported by different
sectors (inpatient, outpatient). As family doctors or primary care physicians, general
practitioners know their patients, their life circumstances, and their individual
needs based on years or even decades of contact. They can therefore assess the patient’s
everyday reality quite well and bring that knowledge to bear in the treatment concept.
As primary treating physicians, it is they in particular who must integrate the palliative
care approach early on in the treatment process and make aware of palliative and hospice
care services. Each area of expertise and the perspectives cited are significant in
the care of neurological patients. However, in order to improve the reality of care,
complementary approaches must be applied in an integrative way in treating these patients
as recommended in NEoLCP [48]. Higher-level coordination processes, e. g., in form of a neuropalliative care nurse
as described in the NEoLCP, proved especially helpful particularly in shaping the
final year of life [49]. In Great Britain, a complementary short-term (12 week) intervention by neurologically
trained, specialized outpatient palliative teams proved useful for seriously ill MS
patients in a clinical phase II study [50]
[51]
[52]. Pain, nausea and vomiting, mouth problems and sleep disturbances significantly
improved. Hospital stays were reduced and cost efficacy improved. Furthermore, the
intervention provided relief for family members [50]
[51]
[52]. A randomized controlled confirmational clinical trial in Great Britain is currently
testing a palliative care short-term intervention for MS and other LTNC such as ALS
and Parkinson’s syndrome (OPTCARE NEURO, Prof. I. Higginson, Cicely Saunders Institute,
King’s College London). In Italy, a randomized control pilot study (NE-PAL) demonstrated
that the use of a specialized outpatient palliative care team alleviated symptoms
(pain, respiratory distress, sleep disturbances bladder problems) in seriously ill
patients with MS, ALS, (atypical) Parkinson’s syndromes and improved their quality
of life [53]. In patients with glioblastoma, a multidisciplinary outpatient team specially trained
in neuro-oncology helped to stabilize the at-home care situation, resulting in fewer
hospital admissions and allowing patients to die at home. Here, too, costs were reduced
[54]. To date, no such intervention studies have been performed in Germany. However,
with the aid of a Delphi survey of experts, criteria were defined [55] as to when and in what form palliative care (GPC/SPC) should be initiated in the
care of MS patients. Criteria included the EDSS score, the onset of treatment with
mitoxantrone, the initial use of treatment aids, transfer to a nursing home, or onset
of severe palliative care symptoms as measured by HOPE, such as pain, nausea, vomiting,
lack of appetite and constipation [56]
[57].
Considerations to Improve The Care of Neurological Patients with Palliative Care Needs
Considerations to Improve The Care of Neurological Patients with Palliative Care Needs
Because there are usually less distinct disease trajectories in neurological illnesses,
it is more difficult than in oncological diseases to define when to start with the
palliative care approach or call upon the assistance of palliative and hospice care
structures to care for neurologically ill patients [21]
[22]
[58]. Disease courses of the diverse progressive LTNC must be studied in order to determine
what signs point to a poor prognosis and what complications will arise toward the
end of life. Possible signs of a poor prognosis for patients with LTNC appear to be:
dysphagia, aspiration pneumonia, recurring infections, and significant worsening of
physical condition [27]. These general indications need to be studied and specified for the various neurological
disease entities [55]. The so-called “surprise question” (“Would I be surprised if this patient died in
the next 12 months?” [59]
[60]) has proved helpful in estimating the 12-month survival probability of patients
with oncological or nephrological diseases [59]
[60]. If this might be true also for neurological diseases still needs to be clarified.
If it succeeds to better describe the disease trajectories of neurological diseases
and thus recognizing poor prognoses earlier, the second stage can be used to define
SOP similar to those for oncology patients [34] as to when to integrate palliative care in a general or specialized form in the
treatment of these patients.
Implementing the palliative care approach in the care of neurological patients requires
common development processes on both the neurological and palliative care sides: Occupational
groups working in neurology need to be sensitized to palliative care issues, and those
working in palliative care must endeavor to raise awareness of the palliative care
needs of non-cancer patients. Joint training courses for neurologists and palliative
care physicians at the regional level as well as at national and international conferences
would be helpful. Another approach would be to give assistant physicians the opportunity
to complete some of their advanced neurology training in palliative care units. Likewise,
palliative care personnel (e. g., nurses, physicians) should be given the opportunity
to work a rotation interval in a neurology department.
Based on international studies [49]
[50]
[51]
[52]
[53]
[54] and the authors’ clinical experience, it is necessary to expand especially outpatient
and most importantly at-home care structures to provide palliative care to neurological
patients. Because seriously ill patients requiring palliative care are usually no
longer able to seek out the required services and healthcare structures themselves,
outreach services must be strengthened in particular. These include the services of
various specialists such as neurologists, in cooperation with palliative care physicians/palliative
care services if at all possible, as well as psychotherapists, social workers, physical
therapists, speech therapists, etc. Patients and their caregiving relatives quite
often express their desire to be relieved of time-consuming coordination processes
[9] because they themselves cannot (or can no longer) do so. Patients and family members
often lack the knowledge of what medical (including palliative care), nursing, co-therapeutic,
hospice, psychosocial, social care and financial aids/services are basically available
to them. Furthermore, establishing appropriate individual coordination centers to
provide cross-sector case management would be helpful in order to use existing healthcare
structures sufficiently and in an integrated way. To date, approaches that point in
this direction have barely been addressed in the literature on patients with neurological
diseases [30]
[61]
[62]. Coordination centers could help to consistently document exactly when problems
cannot be addressed through existing healthcare structures and where there are gaps
in the care of these patients that could be closed by taking steps to modify existing
healthcare structures or create new ones. For example, the form of existing care structures
including palliative and hospice care structures could be adapted to be more adequately
prepared for the disease conditions and courses of neurologically ill patients. Because
these diseases are chronic and sometimes progress in phases, other admissions and
invoicing criteria are necessary than for oncology patients. Until now, insurers have
covered outpatient hospice care services only for end-of-life support of patients
with incurable, progressive, and far advanced illnesses. Such support care can be
reimbursed only after death regardless of how long care was rendered. If outpatient
hospice care services were to treat more chronically ill neurology patients, the very
different disease courses would make rendering such care financially untenable. The
prerequisites for reimbursement of outpatient hospice care services according to §
39a SGBV must be modified such that outpatient hospice care services can bill prior
to the death of the patient should the patient require chronic or intermittent hospice
care. Children receiving palliative and hospice care often have chronic, progressive
metabolic illnesses or neurological diseases in addition to oncology diseases. Unlike
in adult care, pediatric care systems are better suited to treat chronic disease courses.
In pediatric hospices, for example, it is possible to temporarily admit ill children
to provide respite care, i. e., relieve caregiving family members [63]. Such options would certainly be helpful in the care of adult neurological patients.
Thus far, respite care has not been addressed. Instead, admission into an adult hospice
is linked to a life expectancy “of days, weeks or a few months – and for children,
years” [64]. The exception for children described here should also be made for chronically ill
adults such as those with neurological diseases. A special problem arises particularly
after patients reach the age of 18 and are no longer eligible to receive the same
level of care. Adults with neurological diseases, however, do frequently have long
life expectancies with continual or at times severe symptoms and should therefore
receive palliative and hospice care during the course of their incurable progressive
disease. At-home care is especially problematic. Outpatient homecare is often no longer
possible once the illness has reached a certain stage: the over long time periods
(months to years) increased or persistent physical impairments and the associated
inability to provide adequate self-care makes independent living impossible. Moreover,
at some point, caregiving family members and friends can no longer provide care (strain
too great, financial hardships due to absence from work, etc.) and reimbursement limits
for nursing care (SGB XI) and in-home care services (§ 37 SGB V) are exceeded. It
remains to be seen whether the current changes to the eligibility requirements for
services under the nursing care classifications, namely extending the 3 former levels
to 5, will have an effect on this patient group. One welcome change is that limitations
in activities of daily living will play a greater role. It is doubtful that the special
focus of this limitation on mental and psychological causes will help neurological
patients. In ALS, for example, cognitive abilities remain intact for a long time and
the physical abilities to pursue activities of daily living decline more rapidly.
More intensive nursing care as part of in-home care per § 37 SGB V up to round-the-clock,
“one-to-one presence” of qualified care professionals is covered by the insurance
funds as outpatient intensive care as part of in-home nursing care only under certain
conditions, e. g., invasively ventilated patients. This type of care option is rarely
available for other severely impaired patients with serious symptoms, e. g., ALS patients
with shortness of breath, marked sialorrhea, dysphagia, difficulty communicating,
etc., who are neither ventilated nor wish to be so. For these patients consideration
for such care requires an expensive and lengthy review of the individual case that
the family members let alone the patient cannot afford, and the outcome is unclear.
The prerequisite for outpatient intensive care per § 37 SGB V must be expanded to
include these patients. Patients with advanced neurological diseases are often only
left with the option of receiving care in a nursing home. Nursing home care can be
problematic because these facilities are usually specialized in caring for the elderly
and not patients with complex neurological conditions, who are often young or middle-aged
with severe symptoms and require complex assistance (e. g., communication aids, ventilation
systems, cough-aasists). Although their numbers are increasing, there are still few
specialized residential communities (e. g., for ventilated patients ) or specialized
nursing homes for patients with complex neurological diseases (e. g., including for
younger MS sufferers) that offer adequate care. These facilities often lack the necessary
specialized expertise in palliative care (medical/nursing) if a complementary consulting
per §§37b/132d SGB V (SOPC) might not be available.
Appropriate healthcare research must be conducted to better substantiate where gaps
in care exist and how they can be closed. To this end, palliative care research (healthcare
research, clinical trials) must be intensified. This is especially true for Germany
which clearly falls behind in the intenational comparison, e. g., to Great Britain
with respect to healthcare research and clinical trials in palliative care (see above).
To respond to this need, the Federal Ministry for Education and Research (BMBF) issued
a call for funding proposals for research into issues of palliative care in 2016.
Conclusion
Approximately 10% of neurological patients are estimated to have palliative care needs.
In specialized palliative and hospice care structures, approximately 80% of patients
are oncology patients, whose symptoms, needs, and disease trajectories tend to differ
from those of neurological patients. This requires to some extent a structural modification
of palliative and hospice care structures, which should basically be available to
all patients with palliative care needs regardless of their primary illness. Furthermore,
the expertise in the various disciplines (e. g., neurology, neurorehabilitation, palliative
care, general medicine) needs to be applied in an integrated way to render adequate
care to neuropalliative patients, with special consideration given to in-home care
services. Intervention studies of neuropalliative care concepts are currently conducted
in Great Britain, whereas those studies are lacking in Germany, so far.
