University of Groningen
Outcomes after Spinal Cord Injury
Osterthun, Rutger
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Osterthun, R. (2018). Outcomes after Spinal Cord Injury. Rijksuniversiteit Groningen.
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Outcomes after Spinal Cord Injury
The creation of this thesis was supported by Rijndam Revalidatie, Tolbrug Specialist-ische Revalidatie and De Hoogstraat Revalidatie.
The financial support by Rijndam Revalidatie, the University of Groningen, the Univer-sity Medical Center Groningen, Coloplast, Penders Voetzorg and Hollister BV for the printing of this thesis is gratefully acknowledged.
Cover: Erwin Timmerman, Optima Grafische Communicatie
Layout: Optima Grafische Communicatie (www.ogc.nl)
Printed by: Optima Grafische Communicatie (www.ogc.nl)
ISBN: 978-94-6361-184-8 (printed version)
978-94-034-1256-6 (digital version) © 2018 Rutger Osterthun
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Outcomes after Spinal Cord Injury Proefschrift
ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen
op gezag van de
rector magnifi cus prof. dr. E. Sterken en volgens besluit van het College voor Promoties.
De openbare verdediging zal plaatsvinden op woensdag 19 december 2018 om 11.00 uur
door Rutger Osterthun geboren op 11 februari 1980
te IJsselstein
Outcomes after Spinal Cord Injury
Proefschrift
ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen
op gezag van de
rector magnificus prof. dr. E. Sterken en volgens besluit van het College voor Promoties.
De openbare verdediging zal plaatsvinden op woensdag 19 december 2018 om 11.00 uur
door
Rutger Osterthun
geboren op 11 februari 1980Promotor(es) Prof. dr. M.W.M. Post Copromotor(es) Dr. F.W.A. van Asbeck Beoordelingscommissie Prof. dr. J.H.B. Geertzen Prof. dr. V. de Groot
Prof. dr. L.H.V. van der Woude Promotor
Prof. dr. M.W.M. Post
Copromotor
Dr. F.W.A. van Asbeck
Beoordelingscommissie Prof. dr. J.H.B. Geertzen Prof. dr. L.H.V. van der Woude Prof. dr. V. de Groot
CONTENTS
Chapter 1 General introduction 7
Chapter 2 In-hospital end-of-life decisions after new traumatic spinal cord injury in the Netherlands
23 Chapter 3 Characteristics, length of stay and functional outcome of patients
with spinal cord injury in Dutch and Flemish rehabilitation centres
41
Chapter 4 Causes of death following spinal cord injury during inpatient rehabilitation and the first five years after discharge. A Dutch cohort study
55
Chapter 5 Functional independence of persons with long-standing motor complete spinal cord injury in the Netherlands
71 Chapter 6 Physical capacity in relation to participation in persons with
long-standing spinal cord injury
89
Chapter 7 General discussion 105
Summary 123
Samenvatting (Summary in Dutch) 131
Dankwoord (Acknowledgements) 139
1
General introduction
9
SPINal CORd INjuRy
A spinal cord injury (SCI) is an injury to the spinal cord, resulting in for example muscle
weakness, loss of sensation and autonomic dysfunction below the level of injury.1 The
aetiology of SCI can be either traumatic or non-traumatic. Traumatic causes include falls, motor vehicle accidents, sports and violence. Non-traumatic causes include degenerative diseases, vascular diseases, inflammation and tumors.
The degree of loss of function after SCI is determined by the level and completeness
of the injury, such as defined by Kirshblum et al.1 The level of injury refers to the most
caudal segment of the spinal cord with normal sensory and antigravity motor function on both sides of the body, provided that there is normal motor and sensory function rostrally. The levels of injury can be roughly divided in tetraplegia and paraplegia. Tetraplegia can be defined as impairment or loss of motor and/or sensory function in the cervical segments of the spinal cord. A tetraplegia may result in impairment of function in the arms as well as in the legs, trunk and pelvic organs. Paraplegia refers to impairment or loss of motor and/or sensory function in the thoracic, lumbar or sacral segments of the spinal cord. Arm functioning is spared with paraplegia. Depending on the level of injury, the trunk, pelvic organs and legs may be involved. The term paraplegia is also used in referring to cauda equina and conus medullaris injuries.
An SCI is considered as incomplete when there is preservation of sensory and/or motor function below the neurological level that includes the lowest sacral segments, and as complete when there is an absence of sensory and motor function in the lowest
sacral segments.1
EPIdEmIOlOgy
The incidence of traumatic SCI in the Netherlands has been estimated on 11.7 per
million per annum.2 This is on the low end of incidence rates worldwide, which range
from 8 to 53 per million.3,4 There are no incidence figures of non-traumatic SCI in
the Netherlands. Worldwide, incidence rates ranging from 11.4 to 68 per million per annum have been reported, but global incidence rates cannot be estimated because of
for example methodological differences and incomplete case ascertainment.4
There are no prevalence rates of SCI in the Netherlands. Worldwide prevalence rates
range from 280 to 1298 per million for traumatic SCI.4 Prevalence data for non-traumatic
SCI are only available for Australia and Canada, which are respectively 367 and 1227 per
Chapter 1
10
ImPaCT Of SCI
SCI can have a great impact on survival, health, performing activities, social participa-tion and quality of life. These outcomes will be discussed in more detail below. Two classifications, developed by the World Health Organization (WHO), can be used to describe these outcomes. The International Classification of Diseases (ICD) is designed as a health care classification system, providing a system of diagnostic codes for classifying diseases and mortality. The ICD is the standard diagnostic tool for health
management, epidemiology and clinical purposes.5 ICD codes for SCI distinguish for
example in cause of injury (traumatic or non-traumatic) and level of injury.
The International Classification of Functioning, Disability and Health (ICF) provides a scientific, operational basis for describing and studying health and health related states,
outcomes and determinants.6 It describes the effect of a health condition on human
functioning and provides a standard language and framework for the description of health and health-related states. According to the ICF model, three levels of human functioning can be described, namely functioning at the level of body or body part (body functions and structures), the whole person (activities), and the whole person in a social context (participation). Disability therefore involves dysfunctioning at one or
more of these levels: impairments, activity limitations and restrictions in participation.6
These levels are influenced by environmental factors, such as social support, financial and economic resources, and by personal factors, such as gender, age and psychological characteristics. All the aspects of the ICF model interact with each other (figure 1). The
ICF model is recommended to describe functioning in SCI.7
Health Condition
(disorder or disease)
Environmental
Factors Personal Factors Body functions
& structure Activities Participation
General introduction
11
SCI CaRE IN ThE NEThERlaNdS
Three phases of care may be distinguished after a new SCI in the Netherlands, the hospital phase, the rehabilitation phase, and the post rehabilitation phase.
After a new SCI, persons are usually admitted to a hospital.8 The initial care focuses
on prioritizing and treating life-threatening injuries to maximize survival, treating potentially disabling injuries so as to minimize impairment, and minimizing pain and
psychological suffering.9-11 In case of an unstable spine or ongoing compression of the
spinal cord, conservative interventions, surgical interventions or both may be necessary. After their initial hospitalization, persons with SCI are generally admitted to a rehabilitation centre with a SCI specialized unit or to a nursing home for their inpatient rehabilitation. The rehabilitation of persons with SCI focuses on regaining activities and social participation. Preventing and learning to handle secondary health conditions (SHCs), such as a disturbed bladder and bowel function, further form an important part of the rehabilitation. The rehabilitation team consists of physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists and sports instructors. After inpatient rehabilitation, persons may be discharged to their home, a nursing home, or a guided living facility, depending on their functional abilities. Mostly, the inpatient rehabilitation is followed by a period of outpatient rehabilitation. Persons who are functionally independent at the end of their hospital stay may also be directly discharged home from the hospital and depending on their needs they may start rehabilitation in an outpatient setting.
In the post rehabilitation phase, persons with SCI are seen on a regular basis for a check-up by the rehabilitation physician. If necessary, other members of the rehabilitation team can be involved or new outpatient rehabilitation may be occasionally started.
OuTCOmES afTER SCI
Since SCI may have a great impact on survival, health, performing activities, social participation and quality of life, it is relevant to have insight into outcomes and their determinants on these domains. These insights may help to improve outcomes. Out-comes may change over time as a result of for example changing epidemiological characteristics, developments in health care and societal trends. Six main outcomes after SCI will be described in the next paragraphs.
Survival
Survival rates have considerably improved since the 1950s.12 Persons with SCI may
Chapter 1
12
population.12,13 Therefore, it is relevant to keep gaining insight into developments of
survival. Life expectancy of persons with a SCI is shown to be dependent of for example
the age at injury and the level of injury.12 The leading cause of death is found to be
related to the respiratory system.12
In the hospital phase, survival may be considered as one of the main outcomes. An
in-hospital mortality rate of 14% in traumatic SCI is found in the Netherlands.14 Little is
known on in-hospital survival rates of persons with non-traumatic SCI, which may also depend on the underlying condition.
Neurological status
The neurological status, i.e. level and completeness of the injury, of persons with SCI can be described according to the International Standards for Neurological
Clas-sification of SCI (ISNCSCI).1 Recovery of sensory or motor function may occur at the
neurological level or at the completeness of the injury. In complete cervical SCI there is a large chance of recovery (97%) of motor function on one level below the level of injury level if there is any motor function at that level at one month after the injury. Without any motor function one level below the level of injury at one month after the
injury, the change of recovery of motor function on that level is only 27%.15 Fawcett et
al. found that the chance of recovery to ASIA Impairment Scale (AIS) D one year after the onset of SCI was respectively 2, 35, 65 and 95% for persons with AIS A, B, C and D
respectively, after 3 till 28 days.16
health
Many organ systems may be affected after SCI as a result of autonomic and somatic nervous system dysfunction. As a result, persons with SCI are likely to develop SHCs. SHCs are defined as physical or psychological health conditions that are influenced
di-rectly or indidi-rectly by the presence of a disability or underlying physical impairment.17
Examples of SHCs are musculoskeletal pain, neuropathic pain, pressure sores, urinary
tract dysfunction and cardiovascular disease.18,19 Some SHCs may develop soon after
the SCI and others may develop with aging. Prevention and treatment and handling of SHCs are important issues during the persons’ life. SHCs may lead to serious complica-tions and eventually to death.
activities
Regaining activities leading to functional independence is one of the main goals of re-habilitation. The ability to perform activities, such as self-care and mobility, is strongly
related to the injury characteristics.20
Traditionally, functional independence was measured with the Functional Independence Measure (FIM). The use of the more recently developed Spinal Cord
General introduction
13
Independence Measure III (SCIM III) is increasing. The SCIM III was developed for persons with SCI and is shown to be more responsive than the FIM to functional changes
in sphincter management and mobility indoors and outdoors.21,22 It is recommended as
the primary outcome measure to assess functional recovery in SCI.23
Participation
The focus during rehabilitation gradually changes from regaining activities to
improv-ing participation levels, which is an important outcome of the rehabilitation.24,25
Participation may be defined as the involvement of an individual in a life situation and
represents the social perspective on functioning.6 Participation levels among persons
with SCI are in general lower than among non-disabled persons.26-31 Participation
is a complex concept and several determinants of participation are described, such as severity of the injury, age (both at injury as at the time of the study), educational level, functional independence, wheelchair skills, self-efficacy, purpose in life and
environmental factors.26,28-30,32,33 Hospitalization due to SHCs may also lead to lower
participation levels.34
Quality of life
Obviously, quality of life is an important issue throughout the life of a person with SCI. Although they in general experience a lower quality of life than the general population,
most persons with SCI are able to adapt to the consequences of the SCI.35 It has been
found that about 70% of persons with SCI experience a good mental health.35
Psycho-social factors seem to be more related to experienced quality of life than injury related
factors.36 Further, participation and environmental factors are found to be determinants
of quality of life.33,37
EPIdEmIOlOgICal TRENdS IN SCI
Three epidemiological trends can be observed within the field of SCI. The first two trends concern respectively new non-traumatic and new traumatic injuries. The third trend concerns the current (and future) SCI population.
Concerning the first trend, the incidence of non-traumatic SCI is expected to further increase with ongoing aging of the general population, as some non-traumatic causes
of the injury are age related, such as vascular diseases and spinal degeneration.38 There
has been a growing research interest in non-traumatic SCI in the past decades. However,
there are several challenges for research regarding persons with non-traumatic SCI.39 In
general, it is more difficult to gain insight in the non-traumatic SCI population, than in the traumatic SCI population. Persons with non-traumatic SCI may be admitted to several
Chapter 1
14
hospital wards, depending on the underlying diagnosis. They may be registered under another diagnosis and may not be labeled as non-traumatic SCI. This may also lead to less referral to SCI specialized rehabilitation centres. Another complicating aspect on research and care of non-traumatic SCI is that the prognosis of some subgroups may be unclear or unfavorable. The most distinct subgroup is non-traumatic SCI due to a malignant tumor. Referral patterns of these cases seem to have been changing now and then in the Netherlands and it is expected that a part of this subgroup is not referred to
rehabilitation centres due to a unfavorable prognosis.40
In general, the awareness of the importance of rehabilitation of persons with non-traumatic SCI has increased and it seems that more persons with a non-non-traumatic SCI are admitted to SCI specialized rehabilitation centres. Studies on functional
independence after SCI have however been mainly focusing on traumatic SCI.41-43
Since an increasing number of persons with non-traumatic SCI seems to be admitted to inpatient rehabilitation, it is relevant to know whether functional outcomes on activity level are comparable with that of persons with traumatic SCI.
Concerning the second trend, the mean age of persons with a new traumatic SCI has considerably increased in developed countries in the past decades, probably largely
the result of aging of the general population.2 In these countries, traumatic SCI is now
most commonly seen after (same-level) falls. This has resulted in a higher incidence of
persons with an incomplete tetraplegia.2 This change in epidemiological characteristics
of persons with a new traumatic SCI may also affect mortality figures.44 Since traumatic
SCI nowadays seems to be a disease that mainly affects elderly, a persons’ wish to end a life may become more important in survival figures. Little is known on end-of-life
decisions (ELDs) after SCI,45-47 especially not on ELDs in the hospital phase after new
SCI.
Concerning the third trend, more people are nowadays aging with their SCI. Survival rates have considerably improved since the 1950s as a result of improvements in health
care.12 Persons with SCI however still die earlier than non-disabled persons depending
on for example age at injury and injury characteristics.4,12,48 Internationally, persons
with SCI are found to be 2 to 5 times more likely to die prematurely than persons
without SCI.4 Recent research from the U.S. shows that the improvement of survival
of persons with traumatic SCI in the last few decades seems to be mainly based on
improvements in acute care.48,49 However, the risk of death is still the highest during
the first years after injury.49-52 The predominant long-term causes of death have changed
from urological complications to cardiovascular and pulmonary diseases.12 Most
studies on life expectancy only included persons with traumatic SCI.12 Further, there is
no information available on mortality and causes of death in the rehabilitation and post rehabilitation phase in the Netherlands.
General introduction
15
Since there are nowadays more people with long-standing SCI, issues on age- or time since injury-related outcomes have become more important. Although it is often assumed that functional independence decreases with aging, longitudinal studies on
this subject showed inconsistent results53-55 and cross-sectional studies did not find
clues for a decline.53,56-59 Long-term functional independence has not been described
in the Netherlands.
Maintaining participation levels may be another important issue for persons aging
with their SCI.60 Although there are clues for the importance of a good physical capacity
in relation to participation, little research is performed on the relation between physical
capacity and participation.61,62 The relation between physical capacity and participation
is especially interesting since the physical capacity is a modifiable factor.
aIm Of ThE ThESIS
The general aim of this thesis was to gain insight into outcomes and their determinants at the level of survival and functioning, in the hospital, rehabilitation and post rehabili-tation phase after SCI.
Out of several relevant actual topics on outcomes, the following research questions were studied.
1. To which extent do ELDs occur in the hospital after new traumatic SCI in the Neth-erlands? What are the types of ELDs and what are the characteristics of deceased patients? (Chapter 2)
2. What are personal and injury characteristics, length of stay (LOS) and functional outcomes of patients with traumatic and non-traumatic SCI admitted to rehabilita-tion centres in the Netherlands and Flanders? (Chapter 3)
3. What is the mortality ratio and what are the causes and determinants of death from the start of first inpatient rehabilitation until five years after discharge in the Nether-lands? (Chapter 4)
4. What is the association between time since injury and functional independence, measured with the SCIM III, in persons with long-standing SCI? What are the as-sociations between functional independence and level of injury, comorbidities, mental health, waist circumference and SHCs? (Chapter 5)
Chapter 1
16
5. What is the relationship between physical capacity and participation in persons with long-standing SCI controlling for demographics, injury characteristics, SHCs, mental health and functional independence? (Chapter 6)
CONTExT Of RESEaRCh aNd OuTlINE Of ThESIS
This thesis describes outcomes and their determinants after SCI at the level of survival and functioning. The results are described in order of the different phases of care after SCI, namely the hospital, rehabilitation and post rehabilitation phase. Table 1 gives an overview of the outcomes in different phases after SCI and outcomes described in this thesis.
To answer research question 1, discharge letters of persons included in a
hospital-based study on the incidence of TSCI in the Netherlands in 20102 were analyzed in
more detail. The results are described in chapter 2.
For research question 2, we have collected data with a form that was developed for the Minimal Dataset Project by the Dutch Flemish Spinal Cord Society (DuFSCoS). Data of persons admitted to Dutch and Flemish rehabilitation centres between 2002 and 2007 were analyzed. The results are described in chapter 3.
For research question 3, data was partly derived from the Dutch prospective multicentre cohort study ‘Restoration of (wheelchair) mobility in spinal cord injury rehabilitation’. This project was part of the Dutch research program ‘Physical strain, work capacity and mechanisms of restoration of mobility in the rehabilitation of persons with a spinal cord
injury’.63 Additional information on survival status and, if applicable, cause of death was
requested retrospectively from the rehabilitation physician or general practitioner with a form developed for this project. The results of this study are described in chapter 4.
Table 1. Outcomes in different phases after SCI and focus in this thesis
Hospital phase Rehabilitation phase Post rehabilitation phase
Survival ✓* ✓* ✓* Neurological status ✓ ✓* ✓ Health ✓ ✓ ✓ Activities ✓* ✓* Participation ✓ ✓* Quality of life ✓ ✓ ✓
General introduction
17
The data for research questions 4 and 5 was derived from the Active LifestyLe Rehabilitation Interventions in aging Spinal Cord injury (ALLRISC) study, a cross-sectional study in 8 rehabilitation centers in the Netherlands. The main aim of the ALLRISC was to obtain a better understanding of the importance and requirements of
rehabilitation aftercare in aging persons with chronic SCI.64,65 The results of the studies
on question 4 and 5 are described in respectively chapter 5 and chapter 6.
Figure 2 gives an overview on the fi ve studies (chapter 2 to chapter 6) that were performed to answer the research questions in different phases after SCI.
Finally, chapter 7 contains the general discussion of this thesis, including an overview of the main results, implications and directions for future research.
Survival
Functioning
Hospital Rehabilitation Post rehabilitation
End-of-life decisions (Chapter 2)
Survival and causes of death (Chapter 4) Characteristics, length of stay and functional outcome
(Chapter 3)
Functional independence (Chapter 5)
Relation physical capacity-participation (Chapter 6)
Chapter 1
18
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45. Patterson DR, Miller-Perrin C, McCormick TR, Hudson LD. When life support is questioned early in the care of patients with cervical-level quadriplegia. N Engl J Med. 1993 Feb 18;328(7):506-9. 46. Taub AL, Keune JD, Kodner IJ, Schwarze ML. Respecting autonomy in the setting of acute
traumatic quadriplegia. Surgery. 2014 Feb;155(2):355-60.
47. Field HL. A patient with acute traumatic quadriplegia who requested a DNR order. Psychosomatics. 2008 May-Jun;49(3):252-4.
48. Devivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord. 2012 May;50(5):365-72.
49. Strauss DJ, Devivo MJ, Paculdo DR, Shavelle RM. Trends in life expectancy after spinal cord injury. Arch Phys Med Rehabil. 2006 Aug;87(8):1079-85.
50. O’Connor PJ. Survival after spinal cord injury in Australia. Arch Phys Med Rehabil. 2005 Jan;86(1):37-47.
51. Frankel HL, Coll JR, Charlifue SW, Whiteneck GG, Gardner BP, Jamous MA, et al. Long-term survival in spinal cord injury: a fifty year investigation. Spinal Cord. 1998 Apr;36(4):266-74. 52. Chamberlain JD, Meier S, Mader L, von Groote PM, Brinkhof MW. Mortality and longevity after
a spinal cord injury: systematic review and meta-analysis. Neuroepidemiology. 2015;44(3):182-98.
53. Charlifue SW, Weitzenkamp DA, Whiteneck GG. Longitudinal outcomes in spinal cord injury: aging, secondary conditions, and well-being. Arch Phys Med Rehabil. 1999 Nov;80(11):1429-34.
54. Amsters DI, Pershouse KJ, Price GL, Kendall MB. Long duration spinal cord injury: perceptions of functional change over time. Disabil Rehabil. 2005 May 6;27(9):489-97.
General introduction
21
55. Pershouse KJ, Barker RN, Kendall MB, Buettner PG, Kuipers P, Schuurs SB, et al. Investigating changes in quality of life and function along the lifespan for people with spinal cord injury. Arch Phys Med Rehabil. 2012 Mar;93(3):413-9.
56. Daverat P, Petit H, Kemoun G, Dartigues JF, Barat M. The long term outcome in 149 patients with spinal cord injury. Paraplegia. 1995 Nov;33(11):665-8.
57. Pentland W, McColl MA, Rosenthal C. The effect of aging and duration of disability on long term health outcomes following spinal cord injury. Paraplegia. 1995 Jul;33(7):367-73.
58. Fuhrer MJ, Rintala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Arch Phys Med Rehabil. 1992 Jun;73(6):552-7.
59. Jorgensen S, Iwarsson S, Lexell J. Secondary Health Conditions, Activity Limitations, and Life Satisfaction in Older Adults With Long-Term Spinal Cord Injury. PM R. 2017 Apr;9(4):356-66. 60. De Ruijter LS dGS, Adriaansen JJ, Smit CA, Post MWM. . Associations between time since onset
of injury and participation in Dutch people with long-term spinal cord injury. Accepted for publication.
61. Manns PJ, Chad KE. Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Arch Phys Med Rehabil. 1999 Dec;80(12):1566-71.
62. van Velzen JM, van Leeuwen CM, de Groot S, van der Woude LH, Faber WX, Post MW. Return to work five years after spinal cord injury inpatient rehabilitation: is it related to wheelchair capacity at discharge? J Rehabil Med. 2012 Jan;44(1):73-9.
63. de Groot S, Dallmeijer AJ, Post MW, van Asbeck FW, Nene AV, Angenot EL, et al. Demographics of the Dutch multicenter prospective cohort study ‘Restoration of mobility in spinal cord injury rehabilitation’. Spinal Cord. 2006 Nov;44(11):668-75.
64. van der Woude LH, de Groot S, Postema K, Bussmann JB, Janssen TW, Allrisc, et al. Active LifestyLe Rehabilitation interventions in aging spinal cord injury (ALLRISC): a multicentre research program. Disabil Rehabil. 2013 Jun;35(13):1097-103.
65. Adriaansen JJ, van Asbeck FW, Lindeman E, van der Woude LH, de Groot S, Post MW. Secondary health conditions in persons with a spinal cord injury for at least 10 years: design of a comprehensive long-term cross-sectional study. Disabil Rehabil. 2013 Jun;35(13):1104-10.
2
In-hospital end-of-life decisions after
new traumatic spinal cord injury in
the Netherlands
Rutger Osterthun, MD1,2, Floris WA van Asbeck, MD, PhD3,4,
Johanna HB Nijendijk, MD5, Marcel WM Post, PhD2,4
1 Jeroen Bosch Hospital, Tolbrug Rehabilitation Centre, ‘s Hertogenbosch, the Netherlands 2 University of Groningen, University Medical Center Groningen, Center for Rehabilitation,
Groningen, the Netherlands
3 De Hoogstraat Rehabilitation, Utrecht, the Netherlands 4 Brain Center Rudolf Magnus and Center of Excellence in Rehabilitation medicine, University
Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands
5 Rijndam Rehabilitation, Rotterdam, the Netherlands
Chapter 2
24
aBSTRaCT
Study design: Explorative retrospective files study.
Objective: To document end-of-life decisions (ELDs) in in-hospital deaths after new traumatic spinal cord injury (TSCI).
Setting: The Netherlands.
methods: Discharge letters concerning patients with TSCI discharged from Dutch acute hospitals in 2010 were analyzed. Data were extracted on survival, personal and lesion characteristics, comorbidities, other injuries, pre-existing spinal stenosis, stabilising surgery, length of hospital stay and the presence and types of ELDs. Characteristics of deceased patients and survivors were compared using Chi-square and t-tests. Charac-teristics of the deceased patients and ELDs were further explored.
Results: A total of 185 patients with new TSCI were identified. Twenty-six patients were excluded as their survival status at discharge was unknown, for example due to discharge to another hospital without information about their final discharge. Thirty of the remaining 159 patients died during their initial hospital stay (18.9%). Deceased patients were older and had more often high cervical and motor complete injuries than survivors. The circumstances of death were sparsely documented and in nine cases it was not possible to determine the absence or presence of an ELD. ELDs were reported in 19 deaths (63.3%). All were non-treatment decisions, and almost all (89.5%) were decisions of withdrawal of treatment. There were no cases of documented euthanasia or physician assisted suicide.
Conclusion: ELDs were reported in the majority of in-hospital deaths after new TSCI in the Netherlands (63.3%) and all were non-treatment decisions.
In-hospital end-of-life decisions after TSCI
25
INTROduCTION
Survival after traumatic spinal cord injury (TSCI) has improved considerably after World War II. In the past decades, the largest improvements in survival have been achieved
in the first year after the injury.1 Several initiatives to improve the acute care seem to
have contributed to this trend.2 As more persons with a TSCI nowadays survive the
accident and emergency care, this includes cases with a poor long-term prognosis. In these cases, it is likely that patients, family members and health care professionals will make considerations whether starting or continuing treatment would make sense considering the future quality of life of the patient. These considerations may lead to decisions concerning the end of life, and thereby obviously go hand in hand with ethical dilemmas.
End-of-life decisions (ELDs) can be defined as all decisions made by a physician, either with the intention of shortening the patient’s life, or knowing that this decision
may have a potentially life-shortening effect.3 There is no standard and widely agreed
terminology for ELDs.3 However, categories as displayed in Table 1 are frequently used
to describe ELDs. The most radical form of an ELD is the decision for euthanasia. The definition of euthanasia is still debated. The Dutch definition of euthanasia is similar to the definition of the European Association for Palliative Care and is adopted in our
paper (Table 1).4
In the Netherlands, general demands of carefulness with regard to patient-physician relationships are regulated by law, the Act on the Medical Treatment Agreement (WGBO). For example, the WGBO states that the patient should be well informed about his situation, there should be dialogue with a representative in case of incompetence of the patient and that procedures, decisions and considerations should be well documented in the patients’ file. Furthermore, as a principle, the consent of the patient is required for (non-)treatment decisions. Exceptions are however possible, for example in case of medical futility.
The active ending of life is not considered as regular medical practice, and is thus not incorporated in the WGBO. A separate law exists on this subject, the Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act, which is also referred
to as the Euthanasia law.5 In case of euthanasia and physician-assisted suicide, the
attending physician has to act in accordance with six criteria of due care to qualify for a legal exception for homicide. These criteria concern the patient’s request (it must be voluntary and well thought-out), the patient’s suffering (it is unbearable and hopeless), full information provided to the patient, the absence of reasonable alternatives, the consultation of another physician and the applied method of ending life. To demonstrate
their compliance, physicians have to report euthanasia to a review committee.6 Doctors
Chapter 2
26
End-of-life decision making is extremely complex and variable on the part of healthcare professionals, patients and families. Attitudes towards ELDs are determined by several factors, which on a societal level include culture, law and resources, and on an individual level the prognosis, expected functional outcomes and opinions of patients and/or family members. Some studies on ELDs in trauma patients, which also included patients with TSCI, found that a significant number of in-hospital deaths
(42-61%) were preceded by non-treatment decisions.7-10 Advanced age and comorbidities
have been found to be associated with these decisions.7 A survey by Ball et al. on the
clinicians’ viewpoints towards the application end-of-life care for injured patients on intensive care units found that ELD making varied across several continents with regard to age and functional level for patients with a TSCI. However, irrespective of region, most respondents agreed that the level of SCI affected end-of-life decisions, with the
absence of diaphragm function as being the most important.11
Several studies have been performed on in-hospital death after new TSCI.12-19
However, the only studies on ELDs after new TSCI we could find were studies on ethical
considerations, including case reports,20-22 and the aforementioned study on clinicians’
viewpoints towards non-treatment decisions.11 Information on the occurrence of ELDs
and characteristics of the patients involved is thus lacking. It is further unclear whether results from general trauma studies apply to patients with a new TSCI. Within the group of trauma patients, patients with a TSCI have specific characteristics which justify a separate appraisal. Information on ELDs after new TSCI will also help understanding
mortality figures10,12 and will give insight in rationales of these decisions.
As little is known on in-hospital ELDS after new TSCI we performed an explorative study to document ELDs in in-hospital deaths after TSCI in the Netherlands. The main study objectives were to describe the characteristics of deceased patients, the extent to which ELDs occur and the different types of ELDs.
mEThOdS
This study was a secondary analysis of a hospital-based study on the incidence of TSCI
in the Netherlands.23
Study population
The study population consisted of patients with a new TSCI who were admitted to Dutch acute hospitals and discharged with a known survival status in 2010. TSCI was defined as a newly acquired traumatic transverse lesion of the spinal cord or cauda equina, resulting in loss of motor, sensory, bladder or bowel function below the level of the lesion, and lasting longer than 2 weeks.
In-hospital end-of-life decisions after TSCI
27
Procedure
Records of patients discharged from hospitals in 2010 with the International Classification
of Diseases 9th edition (ICD-9) codes 806 (fracture of the spine with injury of the spinal
cord) or 952 (injury to the spinal cord without apparent spinal fracture) were retrieved from the Landelijke Medische Registratie (National Medical Registration); the national database of patients hospitalised in an acute care hospital (trauma centre or general hospital) in the Netherlands. After removal of duplicate records, involved hospitals were
requested to send us the anonymised discharge letters concerning these patients.23
First, these letters were analysed for the presence of TSCI. If so, survival status at discharge and, if applicable, information on the ELD or cause of death were extracted from the discharge letter. Patients were excluded if their survival status at discharge was unknown, for example due to discharge to another hospital without information about the final discharge. To get an impression of the involvement of the patient in the ELD, the discharge letters were searched for the presence of advance directives, statements on the level of consciousness (conscious, confused or unconscious) of the patient and agreement on the ELD between physician and patient and/or family.
Finally, data was extracted on sex, age, aetiology of injury, other injuries, comorbidities, lesion characteristics, pre-existing spinal stenosis, stabilising surgery and length of hospital stay (LOHS). The LOHS was set at 0 if the patient had died or was transferred to another hospital on the day of admission.
Approval by a Medical Ethics Review Committee was not required because discharge letters were anonymised and no patients were at risk in the study.
Instruments
ELDs were categorized as noted in Table 1. If terms like ‘palliative management’ or ‘palliative care’ were used, this was also recorded. However, as palliative care intends
neither to hasten or postpone death,24 this was not considered as an ELD.
Having other injuries was defined as the presence of injuries other than the TSCI on
admission. They were scored according to the 6 point Abbreviated Injury Scale25 and
considered to be relevant when at least one grade 2 (moderate injury) was present. Comorbidities were defined as the presence of one or more other diseases according
to the Charlson Index.26
Lesion characteristics were assessed according to the International Standards
for Neurological Classification of SCI.27 The American Spinal Injury Association
Impairment Scale (AIS) classifications A and B were considered motor complete, and the classifications C and D were considered motor incomplete. Neurologic lesion level was defined as the lowest intact motor and sensory level. Neurologic levels below T1 were defined as paraplegia and neurologic lesion levels at or above T1 were defined as tetraplegia.
Chapter 2
28
analyses
Analyses were performed using IBM SPSS Statistics V.19 (IBM, Armonk, NY). Character-istics of deceased patients and survivors were compared using the Chi-square test and independent T-test. The retrieved information on ELDs was further categorized.
RESulTS
A total of 185 patients with TSCI were identified. Survival status was known in 159 patients. The other 26 patients were excluded from the analyses. The main reason for an unknown survival status was discharge to another hospital ward or acute care hospital. In the excluded group, more patients underwent a stabilizing operation (84.6% versus 53.5%; p 0.003) than in the included group. Other characteristics did not significantly differ between both groups.
The mean LOHS was 25.3 days (SD 28.5; median 18.0; range 0-136). Mean age at injury was 57.0 years (SD 22.2; median 62.0; range 13-100).
A total of 30 of 159 patients (18.9%) died during their hospital stay. Mean time between onset of injury and death was 14.1 days (SD 32.6; median 4, range 0-136). Mean age of deceased patients was 73.6 years (SD 19.4; median 79.5; range 13-100) versus 52.3 years (SD 21.1; median 56; range 14-91) of survivors. Other characteristics of deceased patients and survivors are displayed in Table 2.
In Figure 1, the age distribution is displayed for deceased patients and survivors. Characteristics of deceased patients are displayed in more detail in Table 3. The information in Table 3 has been sorted primarily by the information on the ELDs and secondarily by age. As can be seen in this table, 50% of deceased patients were aged 80+ and 86.7% of them were aged 65+.
Table 1. Categories of ELDs
Euthanasia: a doctor intentionally killing a person by the administration of drugs, at that person’s voluntary and competent request.
Physician assisted suicide: a doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that person’s voluntary and competent request. Non-treatment decisions: decisions to withhold or withdraw potentially life-sustaining treatment Intensified pain and/or other symptom management by the administration of drugs in potentially life-shortening doses
In-hospital end-of-life decisions after TSCI
29
End-of-life decisions
ELDs were reported in 19/30 (63.3%) of deceased patients (Table 3). In the other 11 cases, the letter was incomplete (3), there was no documented ELD (6) or the circum-stances of death indicated that there had been no ELD (2). All ELDs consisted of non-treatment decisions. There were no cases of euthanasia or physician assisted suicide. Almost all non-treatment decisions consisted of a withdrawal of treatment (89.4%). In half of the cases with no documented ELD, the letter noted the start of palliative care. We did not find clues for the application of intensified pain and/or other symptom management by the administration of drugs in potentially life-shortening doses.
Mean age of patients with ELDs was 72.6 years (SD 19.4; median 77.0; range 13-100). Injuries were high cervical (C1-C4) in about three quarters and motor complete in about half of the cases. Comorbidities were present in 63.2% (10.5% unknown). Other injuries were present in 10.5% and all consisted of at least brain injury. Patients with ELDs died on average 18.6 days (SD 40.3; median 4; range 0-136) after the onset of the SCI. A total of 68.4% patients with ELDs were unconscious or confused during
Chapter 2
30
Table 2. Characteristics of deceased patients and survivors
Characteristics Survivors % (N=129) Deceased % (N=30) Total % (N=159) Chi-square P-value Sex Male 73.6 76.7 74.2 0.1 0.733 Female 26.4 23.3 25.8 Age at injury < 65 years 65.1 13.3 55.3 26.4 0.000 65+ years 34.9 86.7 44.7 Cause of injury Sports 14.0 13.3 13.8 0.6 0.898 Traffic 22.5 16.7 21.4 Fall 52.7 56.7 53.5 Other 10.9 13.3 11.3 Level of injury Tetraplegia 66.7 83.3 69.8 3.2 0.073 Paraplegia 33.3 16.7 30.2 Level of injury C1-C4 30.3 63.3 35.7 12.3 0.002 C5-T1 25.2 10.0 22.7 T2-S5 36.1 16.7 33.0 Tetraplegia unspecifieda 8.4 10.0 8.6 Completeness of injury (7b) Motor Complete 32.3 56.0 36.2 5.1 0.024 Motor Incomplete 67.7 44.0 63.8 Comorbidities (30b) Yes 47.1 72.0 51.9 5.0 0.025 No 52.9 28.0 48.1 Other injuries (5b) Yes 28.2 16.7 26.0 1.7 0.195 No 71.8 83.3 74.0 Pre-existing spondylarthropathy (2b) Yes 41.4 48.3 42.7 0.5 0.499 No 58.6 51.7 57.3 Stabilizing operation Yes 58.1 33.3 53.5 6.0 0.014 No 41.9 66.7 46.5
a N=15; not included in Chi-square analysis b Missings
In-hospital end-of-life decisions after TSCI
31
the decision. In 73.7% of cases it had been mentioned in the discharge letter that the decision was made together with the patient or its family. In the other seven cases it was not mentioned. There were no documented advance directives. In nine cases it had been mentioned that the ELD was conform the wish of the patient, either formulated by the patient or by the family. Some quotes from the discharge letters on ELDs are displayed in Table 4.
Table 4. Quotes from discharge letters
Case 1 (13y m, motor complete (high) tetraplegia, brain injury, no comorbidity):
A complete spinal cord injury and severe post-anoxic brain injury were diagnosed. Therefore, it was decided to stop the treatment. In the presence of his family the respiratory support was stopped after which he died almost immediately.
Case 2 (44y m, unknown completeness, paraplegia, brain injury, no comorbidity):
The patient became more and more respiratory and hemodynamically unstable. In consultation with the other physicians, a surgeon and a neurologist, treatment options were discussed with the family. The family knew the patient’s wish was not to be to be resuscitated if they ever had to make this choice. The patient had also indicated that he would not want to live with severe cognitive and physical impairments. After this conversation with the family the treatment was withdrawn.
Case 3 (52y m, motor complete (high) tetraplegia, no other injury, no comorbidity):
An EEG showed clues for post-anoxic brain damage after resuscitation. Furthermore, the MRI of the cervical spinal cord showed severe damage of the myelum at C2. Due to the very poor prognosis we decided to withdraw treatment in consultation with the family and the intensivist.
Case 10 (77y m, motor complete (high) tetraplegia, no other injury, hypertension):
Considering the infaust prognosis and the patient’s desire as expressed by the family that he would not want to live in such a situation, it was decided to stop the treatment that aimed at recovery and to start palliative sedation. The patient was detubated at 8.00PM and died at 8.04PM.
dISCuSSION
This explorative study was a secondary analysis of a hospital-based study on the in-cidence of TSCI in the Netherlands in 2010 and is as far as we know the first study to focus on in-hospital ELDs after new TSCI. We found that 30 of 159 patients died during their initial hospital stay. Patients who deceased were considerably older and had more comorbidities than patients who survived. Furthermore, their injuries were more frequently high cervical and motor complete.
Chapter 2 32 Table 3. Deceased patients (N =30) Case Age Sex Lev el of injury Completeness Comorbidity Other injury LOHS
Documented ELD (relev
ant cir cumstances) Conscious Agreement with 1 13 M C1-C4 A or B no yes 3 withdr aw al of treatment no family 2 44 M T2-S5 unko wn no yes 7 withdr aw al of treatment no family b 3 52 M C1-C4 A or B no no 2 withdr aw al of treatment no family 4 66 M C1-C4 A or B no no 128 withdr aw al of treatment yes
patient & family
b 5 67 M C1-C4 unko wn yes no 4 withdr aw al of treatment no not mentioned 6 68 M C1-C4 unko wn no yes 12 withdr aw al of treatment no family b 7 70 M C1-C4 C or D yes no 136 withdr aw al of treatment (pneumonia) confused not mentioned 8 76 M C1-C4 A or B yes unko wn 2 withdr aw al of treatment no not mentioned 9 77 M C1-C4 A or B unkno wn no 1 withdr aw al of treatment no family b 10 77 M C1-C4 A or B yes no 2 withdr aw al of treatment a no family b 11 79 M C1-C4 A or B yes no 4 withdr aw al of treatment a no family 12 80 M C1-T1 C or D yes no 8 withdr aw al of treatment yes
patient & family
b 13 81 M C1-C4 unko wn yes no 0 withdr aw al of treatment no not mentioned 14 84 M C1-C4 A or B unko wn no 1 withdr aw al of treatment yes
patient & family
15 85 F T2-S5 A or B yes no 18 withdr aw al of treatment (pneumonia) yes
patient & family
b 16 85 M T2-S5 C or D yes no 13 withdr aw al of treatment yes
patient & family
b 17 87 F C1-C4 C or D yes no 2 withdr aw al of treatment confused family b 18 89 M C5-T1 A or B yes no 7
withholding of treatment (respir
atory insufficienc
y)
yes
patient & family
19 100 M C1-C4 C or D yes no 3
non-treatment decision, type unkno
wn (pneumonia)
a
confused
In-hospital end-of-life decisions after TSCI
33
Table 3.
Deceased patients (N =30) (continued)
Case Age Sex Lev el of injury Completeness Comorbidity Other injury LOHS
Documented ELD (relev
ant cir cumstances) Conscious Agreement with 20 83 F C1-C4 A or B yes no 1 no documented ELD a 21 84 F C5-T1 C or D yes no 9 no documented ELD a 22 95 M C1-T1 A or B unko wn no 5 no documented ELD a 23 68 M C5-T1 C or D yes no 0 no documented ELD 24 82 F C1-C4 A or B no no 4
no documented ELD (respir
atory insufficienc y) 25 86 M C1-C4 C or D yes no 2
no documented ELD (respir
atory insufficienc y) 26 65 F C1-T1 C or D unko wn no 27
no ELD (death after resuscitation)
27 77 F T2-S5 C or D unko wn yes 13 no ELD (br ain herniation) 28 20 M T2-S5 unko wn no yes 0 disc
harge letter incomplete
29 81 M C1-C4 C or D yes no 3 disc
harge letter incomplete
30 86 M C1-C4 A or B yes no 5 disc
harge letter incomplete
Abbreviations: LOHS, length of hospital sta
y; ELD
, end-of-life decision
a the disc
harge letter noted the start of palliati
ve care or management
b ELD w
as the patient’
s w
hish, either formulated b
y the patient or b
y the family (no ad
vance directi
Chapter 2
34
We found that ELDs were reported in the majority of deaths (19/30, 63.3%). All ELDs consisted of non-treatment decisions. There were no cases of euthanasia or physician assisted suicide.
Comparing in-hospital ELDs between countries is difficult due to differences in for example culture, law and health care systems. Furthermore, methodological differences between studies may determine mortality figures as well as information on the application of ELDs. As this is the first study that has focussed primarily on
this subject, and studies on in-hospital mortality after TSCI did not report on ELDs,12-19
it is not possible to compare our results to those of other studies in this diagnostic group. We found slightly more non-treatment decisions compared to studies on trauma
patients (42-61%).7-10 In line with our results, Sise et al. concluded that non-treatment
decisions were most commonly applied in frail elderly with comorbidities and less
severe traumas.7 Due to the specific characteristics of patients with a TSCI, comparing
with trauma patients is however simplistic.
Besides age and comorbidities, the level of the spinal cord injury seemed to be associated with ELDs after TSCI in our study. This appears to be in line with the European
clinicians’ viewpoints towards ELDs in the survey of Ball et al.11 That study showed that
the level of injury and absence of diaphragm function were considered to be important, and that age became a more important factor above 65 years. They did not examine the
viewpoint of clinicians on the influence of comorbidities or other injuries on ELDs.11
Due to ethical aspects and the complexity of ELDs it is very difficult to make a value judgment on the application of ELDs. Several issues are relevant, such as the considerations, the capability of the patient to make an informed decision, the presence of an advance directive and the content of the information provided to the patient and family. Only limited information on these issues was available in the discharge letters and therefore our study can only provide a general impression.
The LOHS of persons with an ELD indicates that the timing of the ELD in our study was variable, ranging from 0-136 days. In general, there is a common belief that withholding of treatment is emotionally easier than withdrawing of treatment. This subtle difference may cause patients or families to feel pressure about a critical time window in which withholding of treatment is still possible. Most ELDs in our study were however decisions to withdraw treatment.
There is no consensus on the timing of a non-treatment decision on voluntary request. A minority of patients in our study were conscious and some non-treatment decisions were performed on voluntary request. Being conscious may obviously not be equated with having the capacity of making an informed decision. The patient’s capacity of decision making in the acute phase may be impaired by, for example, sedating medication, concomitant brain injury, mood disturbance or other emotional
In-hospital end-of-life decisions after TSCI
35
Furthermore, information provided to the patient about the functional prognosis may be
incomplete or colored by the individual who provides the information.20,28 Considering
these issues, it has been suggested that ELDs on voluntary request must be postponed to at least two years after the injury, as it may be impossible for the patient to realize
what life will be like early after onset of the condition.20 On the other hand, postponing
the ELD may conflict with the patients autonomy.29 The considerations on the need
for postponing ELDs concerns patients who want to end their life early after the injury
without a profound overview of their perspectives.20, 22 Most patients in our study who
voluntary requested to withdraw treatment were aged 80+, but the sparsely documented circumstances of death in our study did not provide sufficient information for solid conclusions on this subject.
In cases of patients without the capacity of making an informed decision, the presence of an advance directive may facilitate decision making. In these cases it would be interesting to get more insight into the considerations of the ELD. The adequate provision of information on perspectives to the patient and family will anyway remain important.
limitations
The study population was relatively small. As discharge letters were retrieved by means of retrieved ICD-9 codes, cases with TSCI may have been missed, especially cases with severe other injuries. Persons who died at the scene were not included in the study. A small group of patients with an unknown survival status was excluded. The main characteristics of the excluded patients however did not differ from the included group.
Several limitations are the result of the retrospective nature of our study and the use of discharge letters. The usability of the letters was variable, as some letters contained limited information and some were incomplete. Owing to the sparsely documented circumstances of death, the number of ELDs may be underestimated and details of individual cases have remained unknown.
For the purpose of this study, we have assumed that the ELDs have been correctly presented in the discharge letter. As the ELDs that are reported in this study are not controversial in the Netherlands, we don’t expect under-reporting due to physician’s reluctance to describe the critical events.
In six cases the discharge letter noted the start of palliative care, two times after a pneumonia. In half of these cases, no further ELD was mentioned. In these cases we are not sure about the correct usage of the term palliative care by the physician. Palliative care intends neither to hasten or postpone death according to the WHO
definition.24 In a Belgian study, however, palliative sedation was found to be used as
an umbrella term covering a large variety of practices which often coincided with
Chapter 2
36
to our results, although we did not find clues for the application of intensified pain and/or other symptom management by the administration of drugs in potentially life-shortening doses.
Due to the Dutch regulations, it seems unlikely that euthanasia has been performed without being reported. Performing euthanasia would also be illogical in cases in which withdrawing of treatment is possible, as the latter is more feasible and less aggravating. It may have however happened that ELDs, euthanasia included, were considered but postponed to the discharge destination.
Implications
This explorative study provides insight in the application of in-hospital ELDs after new TSCI in the Netherlands and showed that ELDs were reported in the majority of in-hospital deaths. Since the ELDs were most prevalent in elderly patients, the number
of elderly with a new TSCI is growing,23 and the acute care may further improve, the
number of in-hospital ELDs after TSCI can be expected to grow or at least remain substantial.
As this study showed that in-hospital ELDs after new TSCI were common, it is remarkable that little attention has been paid to this subject in the current literature. The use of a standard and widely agreed terminology for ELDs would be helpful for future studies. Including information on ELDs in future studies on in-hospital mortality will provide more insight into the application of ELDs across countries. Furthermore,
providing this information may help understanding mortality figures,10,12 although
estimating to what extend mortality figures are influenced by ELDs will remain complex. Larger, prospective studies focussing on ELDs in more detail can further contribute to the understanding of the application of ELDs. More specifically, information on the types of ELDs, characteristics of the involved patients, considerations, the timing, the capability of the patients to make an informed decision and the content of the information provided to the patient and family would be valuable. Gaining insight into the application of ELDs across countries may ultimately lead to a better substantiation of decisions.
The frequent occurrence of ELDs supports the importance of standardization of care around in-hospital ELDs after TSCI. This should amongst other things comprise a thorough provision of information on the prognosis and expected outcomes to the patient and family. The presence of advance directives may facilitate decision making.
