End-of-Life Decision Making for Cancer Patients in Different Clinical Settings and the Impact of the LCP

Article Outline

• Abstract
• Introduction
• Patients and Methods
  • Patients
  • Data Collection
  • Data Analysis
• Results
  • Response and Patient Characteristics
  • The Last Three Months of Life
  • The Last Three Days of Life
• Discussion
• Acknowledgments
• References
• Copyright

Abstract 

Differences in the general focus of care among hospitals, nursing homes, and homes may affect the adequacy of end-of-life decision making for the dying. We studied end-of-life decision-making practices for cancer patients who died in each of these settings and assessed the impact of the Liverpool Care Pathway for the Dying Patient (LCP), a template for care in the dying phase. Physicians and relatives of 311 deceased cancer patients completed questionnaires. The LCP was introduced halfway through the study period. During the last three months of life, patients who died in hospital received anticancer therapy and medication to relieve symptoms more often than those in both other settings. During the last three days of life, patients who died in the hospital or nursing home received more medication than those who died at home. The LCP reduced the extent to which physicians used medication that might have hastened death. Relatives of patients who died in the hospital tended to be least positive about the patient's and their own participation in the decision making. We conclude that cancer patients who die in the hospital are more intensively treated during the last phase of life than those who die elsewhere. The LCP has an impact on the use of potentially life-shortening medication during the dying phase. Communication about medical decision making tends to be better in the nursing home and at home.

Key Words: End-of-life care, end-of-life decisions, decision making, palliative care, Liverpool Care Pathway for the Dying Patient

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Introduction 

The goals of medical care need to be adjusted when death approaches. In the dying phase, the patient's comfort is key to all decisions about care and treatment.¹ Such decisions may involve the use of interventions aimed at symptom control and the forgoing of burdensome or futile interventions. Symptom control and emotional support have been shown to be suboptimal for substantial proportions of patients dying in the hospital, the nursing home, or at home.², ³, ⁴, ⁵, ⁶, ⁷, ⁸ The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments among bereaved relatives in the United States concluded that many patients dying in hospitals have unmet needs concerning symptom relief and psychosocial care.², ³

In the World Health Organization definition of palliative care, both prolonging of life and hastening of death are stated not to be among the goals of care for the dying.¹ However, studies in several countries have shown that efforts to enhance the patient's comfort rarely result in the (possible) hastening of death.⁴, ⁹ Such hastening of death is often an unintended effect of decisions to forgo potentially life-prolonging but burdensome treatment or to use highly dosed medication to relieve severe pain or other symptoms. In some cases, hastening of death is an appreciated or even explicitly intended effect because of the severe suffering of the patient without any prospect of relief.¹⁰

Decisions about medical care have to be made in all settings where patients die. The characteristics of each setting may have a significant impact on such decision making. Hospital care is primarily aimed at curing disease and prolonging life; death is usually an unforeseen outcome of hospital admission. Patients are typically admitted to a hospital for specialized, mostly short-term care, which cannot be given elsewhere. In the hospital, patients receive care from clinical specialists and hospital nurses. In The Netherlands, chronically ill patients who need constant care often are provided this in a nursing home. Death is often the expected final outcome of long-term admission to a nursing home. The nursing home physician and nurses provide nursing home care. Patients dying at home in The Netherlands usually receive care from their general practitioner with whom they often have a long-standing relationship and, if needed, from home care nurses who may visit the patients once or several times a day.

The Liverpool Care Pathway for the Dying Patient (LCP) has been developed to improve care for the dying in all settings. The LCP is aimed at structuring care in the last days of life and at facilitating audit by standardizing the monitoring of care.¹¹, ¹² It takes into account physical, psychosocial, and spiritual aspects and has been shown to improve patients' symptom burden and to contribute to the communication with patients and their families.¹³ One of the goals of care in the LCP concerns the decision making about which treatments are appropriate during the dying phase.¹⁴ The use of medication is assessed, and nonessential drugs are discontinued. Essential oral drugs are administered through the subcutaneous route, and a syringe driver is used if appropriate. PRN (“as required”) subcutaneous medication is ordered for symptoms that may occur during the dying phase, such as pain and agitation. Medical and nursing interventions that are considered inappropriate, such as blood tests, intravenous fluids, or a routine turning regimen, are stopped.

We investigated physicians' and bereaved relatives' perspectives on end-of-life decision-making practices during the last three months and the last three days of life of cancer patients and assessed the impact of the LCP. We studied the three main settings for death and dying in The Netherlands, that is, the hospital, the nursing home, and the home.

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Patients and Methods 

Patients 

Patients were recruited for our study in a university hospital (three medical oncology departments, a department for pulmonary diseases, and a gynecology department), a general hospital (a department of medical oncology), all departments in one nursing home (five general departments and one palliative care department), two departments in another nursing home (a general department and a palliative care department), a residential care organization that provides nursing care to about 60 people who live independently, and a home care organization that provides home care in a region of eight villages in the southwest of The Netherlands. The study comprised two consecutive periods: a baseline period, during which we assessed usual practices; and an intervention period, during which all departments used the LCP for patients who were recognized to be in the dying phase. All patients older than 18 years, who received inpatient care of the participating department or outpatient care in the case of the home care organization, were informed of the study. Patients who died during the study period were eligible for the study. Patients who had expressed objections against the use of their medical or nursing record were not included. The Medical Ethical Research Committee of the Erasmus Medical Center approved the study.

Data Collection 

Data were collected between November 2003 and February 2006. Within a week after the death of the patient, the patient's physician filled in a questionnaire about medical decisions and interventions during the last three months of the patient's life and about medication during the last three days of life. About two months after the death of the patient, the relative who had been the “contact person” for the patient received a letter from the institution that had provided care in the last phase before death, asking him or her for consent to be approached by the research team to fill in a written questionnaire. In case the relative did not respond, a reminder was sent after two weeks and after three months, respectively. Only relatives who gave their consent were mailed a questionnaire. Relatives were asked to assess the patient's symptom levels in the last three days of life and their own experiences with medical decision making in the last three months of life. Questions about pain, dyspnea, nausea or vomiting, feeling depressed, and being worried originated from the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire-C30. The agreement between scores of patients and observers has been shown to be moderate to good for this questionnaire (intraclass correlation=0.42–0.79).¹⁵ Questions were added about incontinence, agitation, anxiety, and confusion, because these symptoms are common in the last phase of life.¹⁶, ¹⁷, ¹⁸, ¹⁹, ²⁰

Data Analysis 

Only patients who died of cancer were included in the analyses for this article. Symptom scores of 2–4 were recoded as 1 (symptom was present), and a score of 1 was recoded into 0 (symptom was not present). The statistical significance of differences between settings in end-of-life decision making during the last three months of life and the relatives' evaluation was tested using Chi-squared tests and analysis of variance tests where appropriate. Differences in medical care during the last three days of life and the contribution of the LCP were analyzed using the intention-to-treat principle, that is, all patients who died during the intervention period were included regardless of whether or not the LCP had been used. We used logistic regression models that controlled for the effect of setting and age.

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Results 

Response and Patient Characteristics 

During the study period, 613 patients died within the participating care settings. Eighty-one patients who could not be informed about the study, mainly because of their weak health status, were not included. Nineteen patients who expressed objections regarding the use of their medical or nursing record after their death were not included either. Of the remaining 513 patients, 311 had cancer. Physicians' data could be used in 299 (96%) of all included cases, and relatives were willing to participate in 184 cases (59%). Of all the patients included, 192 died in the hospital, 83 in the nursing home, and 36 at home. Patients dying in the hospital were younger than those dying in the nursing home or at home (Table 1). In all settings, the most common types of cancer were gastrointestinal cancer, lung cancer, and breast cancer; hematological malignancies were relatively common in patients who died at home.

Table 1. Characteristics of Cancer Patients Dying in Three Different Clinical Settings

Patient Characteristics	Hospital (n=192)	Nursing Home (n=83)	Home Care (n=36)	P-valuea
Age, years: mean (SD)	64 (14)	74 (12)	75 (13)	<0.001b
Sex				0.46
Male	47	53	42
Female	53	47	58
Type of cancer				0.19
Gastrointestinal	26	29	33
Lung	15	14	19
Breast	13	10	11
Urogenital	16	18	8
Hematological	11	6	22
Other	15	21	3
Unknown	5	2	3
Symptoms during the last 3 days of lifec
Dyspnea	89	88	75	0.18
Being worried	89	84	65	0.01
Pain	88	82	83	0.62
Agitation	84	82	83	0.96
Feeling depressed	79	88	70	0.19
Anxiety	79	76	40	<0.001
Confusion	49	76	60	0.01
Incontinence	38	81	68	<0.001
Nausea/vomiting	36	38	42	0.87
Study period
Baseline period	53	46	42	0.31
LCP period	47	54	58

Values are percentages unless otherwise indicated.

SD=standard deviation.

The Last Three Months of Life 

Cancer treatment had extended to the last three months of life for a substantial number of patients, especially for those who died in the hospital: Physicians reported that 40% of all hospital patients had received chemotherapy during the last three months of life, whereas it was 26% for patients who died at home and 16% for nursing home patients (Table 2). Radiotherapy also had been used most frequently for hospital patients. In about a quarter of all patients in all settings, it was decided to discontinue cancer therapy. These decisions were usually made at the request or with the consent of the patient, mostly because of the poor and deteriorating condition of the patient. In the large majority of patients, discontinuation of therapy was estimated to probably have shortened life by less than one week. Decisions not to initiate a cancer therapy were somewhat less common than those to discontinue cancer therapy. The involvement of patients in such decisions, the underlying motives, and the estimated impact were largely comparable to those of decisions to discontinue cancer treatment.

Table 2. Cancer Treatment During the Last Three Months of Life (Physicians' Questionnaire)^a

Cancer Treatment	Hospital Patients (n=190)	Nursing Home Patients (n=80)	Home Care Patients (n=28)	P-valueb
Cancer treatment during the last 3 months of life	58	36	39	<0.001
Chemotherapyc	40	16	26	<0.001
Radiotherapy	26	10	15	<0.001
Surgery	9	19	7	0.04
A cancer therapy was discontinued	29	23	18	0.29
Medical reasons for discontinuing cancer therapy
Poor condition of patient	89	89	100	0.73
Occurrence of side effects	13	22	20	0.62
Decision to discontinue cancer therapy was made after explicit request/consent of the patient	85	82	80	0.95
Discontinuing cancer therapy probably shortened the patient's life by less than a week	90	83	80	0.62
A cancer therapy was not started	22	14	14	0.29
Reasons for not starting cancer therapy
Poor condition of patient	90	70	100	0.18
Risk of side effects	78	80	50	0.45
Wish of patient	3	40	25	<0.001
Decision not to start cancer therapy was made after explicit request/consent of the patient	65	90	75	0.30
Not starting cancer therapy probably shortened the patient's life less than a week	85	50	100	0.03

Values are percentages unless otherwise indicated.

More than half of all relatives reported that the patient had discussed wishes concerning medical treatment at the end of life with either the physician, the nursing staff, or the relatives (Table 3). About one-quarter of all patients were reported to have appreciated further discussions with their physician about their treatment preferences, such as their wish to abstain from life-prolonging treatments, their desire for sufficient symptom control, or the possibility of euthanasia or sedation. Few patients had laid down their wishes in a written living will. Nursing home patients had more often (29%) refused a medical treatment than patients who died at home (17%) or hospital patients (7%). Relatives of patients who died in the hospital somewhat more often felt that the patient's wishes had not been fully granted than did the relatives of nursing home patients and patients who died at home (43%, 33%, and 25%, respectively), and they most often said that a decision had been made with which the patient had disagreed (13%, 7%, and 0%, respectively). Relatives of hospital patients were also slightly less positive about their own involvement in the decision making: 18% thought that they had been insufficiently involved compared with 12% of relatives of nursing home patients and 0% of the relatives of patients who died at home. Further, 21% of the relatives of hospital patients and less than 5% of the other relatives said that a decision had been made with which they had disagreed.

Table 3. Relatives' Evaluation of Medical Decision Making at the End of Life (Relatives' Questionnaire)

Characteristics of the Decision Making	Hospital Patients (n=107)	Nursing Home Patients (n=51)	Home Care Patients (n=26)	P-valuea
Role of patient
The patient discussed his/her wishes in relation to medical treatment in the dying phase with	64	69	54	0.44
Physician(s)	48	55	44
Nurse(s)	13	16	16
Relative(s)/friend(s)	58	51	48
The patient would have liked to discuss his/her wishes in relation to medical treatment in the dying phase with a physician	31	29	23	0.65
Wishes that patient would have liked to be discussed
No life-prolonging treatments	28	7	20
Euthanasia/sedation	31	38	20
No euthanasia	0	7	20
Other	24	38	20
The patient had made up a written living will	13	14	15	0.96
Wishes that were included in living will
No life-prolonging treatments	23	43	50
Symptom control	8	14	50
Euthanasia/sedation	39	43	0
Other	31	29	50
The patient refused a medical treatment	7	29	17	0.001
Treatments that were refused
Surgery	14	33	0
Radiotherapy	43	27	0
Chemotherapy	29	40	25
Other	14	20	75
Wishes that were discussed were granted				0.17
Yes	57	67	75
More or less	22	30	8
No	21	3	17
A decision was made with which the patient disagreed	13	7	0	0.10
Role of relative
Relative was informed about the patient's situation				0.22
Too much	3	0	0
Adequately	81	90	96
Too little	16	10	4
Relative was involved in decision making for				0.17
All decisions	76	74	96
Some decisions	14	18	4
None of the decisions	10	8	0
Relative thought that he/she was involved				0.06
Sufficiently	82	88	100
Insufficiently	18	12	0
A decision was made with which the relative disagreed	21	2	4	0.002

Values are percentages unless otherwise indicated.

The Last Three Days of Life 

In all settings, the most frequently reported physical symptoms during the last three days of life were pain and dyspnea (Table 1). Incontinence was more common among nursing home patients and patients who died at home compared with hospital patients. Most of the patients in all settings also were reported to have had psychological symptoms, such as depression and anxiety. Patients who died at home had less often suffered from being worried or from feelings of anxiety than those in both other settings. Hospital patients had less often been confused than other patients. About half of all patients had been included during the LCP period; the LCP had actually been used during this period for 63 hospital patients, 40 nursing home patients, and 17 patients who died at home (not shown in Table 1).

Data on the use of medication during the last three days of life and differences between the settings, the study periods, and two age groups are presented in Table 4. Patients who died in the hospital had, on average, received 5.7 types of drugs, whereas the mean was 5.6 for nursing home patients and 3.1 for patients who died at home. The most common type of drug in all settings was pain medication, especially opioids. Other common types were sedatives and antipsychotics. Virtually, all types of medications were least common among patients who died at home, except antipsychotics. Antibiotics and anticoagulants were most often used for hospital patients. Psychoactive drugs, such as antipsychotics and antidepressives, seemed to be most common in the nursing home. The LCP had no significant impact on the types of drugs used during the last three days of life in most cases.

Table 4. Medication During the Last Three Days of Life (Physicians' Questionnaire)^a

Medication	Hospital Patients	Nursing Home Patients	Home Care Patients	Baseline Period	LCP Period	Age <70 Years	Age ≥70 Years
Total number of drugs, mean (SD)	5.7 (3.0)	5.6 (2.6)	3.1 (2.0)	5.8 (3.2)	5.0 (2.5)	5.4 (2.9)	5.5 (3.0)
Pain medication
Percentage	91	94	79	94	87	93	87
Odds ratio (95% CI)b	Ref.	2.1 (0.7–6.2)	0.4 (0.2–1.3)	Ref.	0.4 (0.2–0.9)	Ref.	0.4 (0.2–1.0)
Opioids
Percentage	89	89	75	91	84	90	85
Odds ratio (95% CI)	Ref.	1.2 (0.5–2.8)	0.4 (0.2–1.1)	Ref.	0.5 (0.2–1.0)	Ref.	0.6 (0.3–1.2)
Sedatives
Percentage	46	59	39	51	46	49	47
Odds ratio (95% CI)	Ref.	1.8 (1.0–3.2)	0.8 (0.4–1.9)	Ref.	0.8 (0.5–1.3)	Ref.	0.8 (0.5–1.3)
Gastrointestinal medication
Percentage	34	35	11	33	31	28	37
Odds ratio (95% CI)	Ref.	0.9 (0.5–1.7)	0.2 (0.06–0.7)	Ref.	0.9 (0.6–1.5)	Ref.	1.6 (0.9–2.7)
Corticosteroids
Percentage	34	23	4	30	25	32	22
Odds ratio (95% CI)	Ref.	0.7 (0.4–1.3)	0.08 (0.01–0.6)	Ref.	0.8 (0.5–1.3)	Ref.	0.7 (0.4–1.2)
Cardiovascular medication
Percentage	33	33	11	33	28	28	34
Odds ratio (95% CI)	Ref.	0.9 (0.5–1.7)	0.2 (0.07–0.8)	Ref.	0.8 (0.5–1.3)	Ref.	1.5 (0.9–2.5)
Antibiotics
Percentage	31	14	7	23	26	24	25
Odds ratio (95% CI)	Ref.	0.3 (0.1–0.6)	0.1 (0.03–0.6)	Ref.	1.3 (0.7–2.3)	Ref.	1.5 (0.8–2.7)
Antiemetics
Percentage	26	31	7	32	20	26	26
Odds ratio (95% CI)	Ref.	1.4 (0.8–2.6)	0.2 (0.05–1.0)	Ref.	0.5 (0.3–0.9)	Ref.	0.9 (0.5–1.6)
Anticoagulants
Percentage	24	6	7	21	13	16	18
Odds ratio (95% CI)	Ref.	0.2 (0.07–0.5)	0.2 (0.05–1.0)	Ref.	0.6 (0.3–1.2)	Ref.	1.6 (0.8–3.0)
Antipsychotics
Percentage	20	40	25	26	26	21	32
Odds ratio (95% CI)	Ref.	2.5 (1.4–4.6)	1.3 (0.5–3.2)	Ref.	0.9 (0.5–1.6)	Ref.	1.4 (0.8–2.5)
Antidiabetic medication
Percentage	7	5	4	5	7	7	6
Odds ratio (95% CI)	Ref.	0.6 (0.2–2.1)	0.4 (0.06–3.6)	Ref.	1.4 (0.5–3.8)	Ref.	1.1 (0.4–2.9)
Antiepileptic medication
Percentage	6	8	0	6	6	7	5
Odds ratio (95% CI)	Ref.	1.4	0.002 (0.000–1.5)	Ref.	0.9 (0.3–2.5)	Ref.	0.6 (0.2–1.7)
Antidepressive medication
Percentage	5	13	4	6	8	5	9
Odds ratio (95% CI)	Ref.	2.3 (0.9–6.2)	0.6 (0.07–5.1)	Ref.	1.3 (0.5–3.3)	Ref.	1.5 (0.6–4.1)

SD=standard deviation; CI=confidence interval; Ref. = reference group with which other groups are compared.

Do-not-resuscitate agreements were much more common for patients who died in the hospital and the nursing home than for those who died at home (Table 5). In most of the cases, at least one of the options of last resort to alleviate patients' suffering, that is, increasing the dosage of opioids, sedation, or voluntary euthanasia, was discussed with the patient. This especially holds for intensified alleviation of symptoms, which was discussed with 43%–58% of all patients. The frequency of discussing options of last resort tended to be highest for nursing home patients. Discussion of these options did not always result in their actual application. Physicians estimated that drugs that had been used to alleviate symptoms had potentially shortened life in 44% of all patients who died in the hospital, 30% of all patients who died in the nursing home, and 14% of all patients who died at home. The extent to which such drugs may have shortened the patient's life was, however, estimated to have been limited to a maximum of one week in the large majority of cases (>90%) in all groups. Sedation, defined as parenteral administration of benzodiazepines or barbiturates, was used for 27% of the hospital patients, 33% of the nursing home patients, and 11% of the patients who died at home. Euthanasia was used for one patient in this study. Introduction of the LCP reduced the use of drugs that were estimated to have a potentially life-shortening effect, from 46% to 28%. Further, potentially life-shortening drugs or sedatives were more often provided after an explicit request or permission of the patient after introduction of the LCP.

Table 5. Options of Last Resort (Physicians' Questionnaire)

Options of Last Resort	Hospital Patients	Nursing Home Patients	Home Care Patients	Baseline Period	LCP Period	Age <70 Years	Age ≥70 Years
Do-not-resuscitate agreement
Percentage	87	87	37	81	84	86	79
Odds ratio (95% CI)a	Ref.	1.3 (0.5–2.9)	0.1 (0.04–0.2)	Ref.	1.3 (0.6–2.6)	Ref.	0.6 (0.3–1.3)
Options of last resort that were discussed with the patient
Intensified alleviation of symptoms
Percentage	43	58	54	46	50	50	46
Odds ratio (95% CI)	Ref.	2.0 (1.1–3.5)	1.6 (0.7–3.6)	Ref.	1.1 (0.7–1.8)	Ref.	0.7 (0.5–1.2)
Sedation
Percentage	30	39	32	29	37	35	30
Odds ratio (95% CI)	Ref.	1.6 (0.9–2.9)	1.2 (0.5–2.8)	Ref.	1.4 (0.8–2.3)	Ref.	0.7 (0.4–1.2)
Euthanasia or physician assistance with suicide
Percentage	15	25	14	18	17	23	10
Odds ratio (95% CI)	Ref.	2.6 (1.3–5.4)	1.2 (0.4–3.9)	Ref.	0.8 (0.4–1.6)	Ref.	0.3 (0.1–0.6)
Actual use of options of last resort3
Symptoms were alleviated with potentially life-shortening drugs
Percentage	44	30	14	46	28	44	29
Odds ratio (95% CI)	Ref.	0.6 (0.4–1.2)	0.2 (0.07–0.7)	Ref.	0.5 (0.3–0.8)	Ref.	0.6 (0.3–0.9)
Sedationb
Percentage	27	33	11	27	27	32	21
Odds ratio (95% CI)	Ref.	1.5 (0.8–2.8)	0.4 (0.1–1.3)	Ref.	1.0 (0.6–1.7)	Ref.	0.5 (0.3–0.9)
The decision to use these drugs was made after explicit request/permission of the patient
Percentage	69	87	100	67	85	76	70
Odds ratio (95% CI)	Ref.	3.8 (1.0–15.4)	>2000 (0.0–>2500)	Ref.	2.7 (1.0–7.9)	Ref.	0.6 (0.2–1.6)
Use of drugs probably shortened the patient's life less than a week
Percentage	98	92	100	97	95	96	97
Odds ratio (95% CI)	Ref.	0.2 (0.03–1.8)	170 (0–∞)	Ref.	0.7 (0.09–6.0)	Ref.	2.3 (0.2–27)

CI=confidence interval; Ref. = reference group with which other groups are compared.

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Discussion 

The age distribution and symptoms that were most commonly reported for patients in our study were mostly typical for dying cancer patients.¹⁵, ¹⁶, ¹⁷, ¹⁸, ¹⁹, ²⁰ In all settings, a substantial number of patients were reported to have suffered from psychological symptoms. Most of the patients were reported to have had feelings of depression and anxiety during the last three days of life. Patients who died in the hospital or the nursing home more often had feelings of anxiety than those who died at home, and patients who died in the nursing home were more often confused than other patients. These results have to be interpreted cautiously, because the reliability of relatives' estimates of the degree of suffering of dying patients from nonphysical symptoms has been reported to be doubtful.²¹, ²² Nevertheless, despite the fact that possibilities to treat depression or other psychological problems at the end of life are often limited, the high rates of psychological symptoms may also be related to a certain extent of undertreatment. Caregivers may not be sufficiently trained to recognize these symptoms, because they are unaware of the available treatment options or because psychological symptoms are considered to be a normal part of terminal illness.²³, ²⁴, ²⁵, ²⁶

Cancer treatment was relatively often continued until late in the disease process for patients dying in the hospital. We have shown elsewhere that hospital patients also more often receive other types of intensive treatment during the last months and days of life than patients dying in other settings.²⁷, ²⁸ Further, the number of drugs patients received during the last three days of life was relatively high for hospital and nursing home patients. Several drugs that were relatively common in the hospital, such as antibiotics, anticoagulants, and corticosteroids, were probably not primarily given to contribute to the dying patient's comfort. The differences in treatment between settings during the last phase of life are most likely the result of both patient selection and characteristics of the settings. On the one hand, patients who die in the hospital are probably often those for whom prolongation of life, and sometimes even cure, is seen as a realistic care goal until late in the disease process by the patient, the physician, or both. Furthermore, hospital patients were relatively young, and they possibly represent patients in whom the disease develops rapidly or has an unexpected or unusual course. On the other hand, hospital treatment of cancer patients may be longer than the treatment in other settings, focused at treating the underlying disease instead of providing comfort care. Such an inclination may not be in the best interest of the patient in all cases.

The most commonly used drugs were analgesics. The large majority of patients received opioids during the last three days of life, which seems to be in accordance with guidelines for the treatment of pain in terminal patients. Sedatives were the second most often prescribed type of drug, especially in the nursing home. It has previously been shown that the use of sedatives is especially common at somatic nursing home wards, which was attributed to an inclination to suppress symptoms of agitation in such wards.²⁹ Time trend studies of end-of-life decision-making practices have found an increase in the use of sedation at the end of life in hospitals, nursing homes, and at home.³⁰ This increase is probably because of growing awareness that parenteral sedatives may be used to suppress otherwise refractory symptoms in dying patients.²⁸, ³⁰

Decisions to refrain from potentially life-prolonging treatment during the last three months of life were rather common in all settings and do not seem to have been made less frequently for patients who died in the hospital. Both withdrawing and withholding life-prolonging treatment had limited life-shortening effects. The degree to which forgoing treatment shortens life has been found to be more pronounced elsewhere.³¹, ³² This may be because of the fact that our study only comprised cancer patients in whom the prognosis and the extent to which life might be shortened by decisions not to use potentially life-prolonging treatment is often more clear than in other patients. Furthermore, it cannot be ruled out that we did not identify all nontreatment decisions. We could, for example, have missed decisions that were made earlier in the disease process by others than the physicians who attended the patients during the dying process.

Bereaved relatives of patients who died in the hospital were less positive about the decision making than those of the patients who had died elsewhere. Dissatisfaction about medical decision making at the end of life for patients dying in the hospital has been found elsewhere, too.², ³, ²⁸ Bereaved relatives' evaluation of end-of-life care and medical decision making is likely to be influenced by other factors than the quality of care and communication itself, such as the characteristics of the dying process. The complexity of the symptoms of patients who die in the hospital; the resulting intensity of medical treatment and decision making, where generally several physicians are involved; and the typical focus of hospital care at cure and prolongation of life probably also contribute to negative feelings among bereaved relatives. The dying phase was often relatively short in the hospital, because of which the adaptation of the focus of care had to occur in a short time span. Earlier recognition of the imminence of death might have contributed to the relatives' involvement in and support for the decision-making process in some cases. However, it is also to be recognized that death cannot be foreseen in all cases. As a result, the continuation of burdening treatment aimed at the prolongation of life until very late in the dying process cannot always be prevented, which might especially hold true for the hospital setting.

Discussions of options of last resort were part of end-of-life care in most of the cases. We did not observe large differences between settings in the characteristics of such discussions, except for do-not-resuscitate agreements, which were much more common in institutional settings. Alleviation of symptoms with drugs in dosages that might have hastened death was especially common in the hospital. This finding might represent an intensive treatment trajectory for patients who die in the hospital because of symptoms or complications that are not easily alleviated elsewhere. It might, however, also be the result of a raised concern about the potentially life-shortening effects of opioids or other drugs among hospital physicians who may be inexperienced in the field of death and dying.

Introduction of the LCP significantly reduced the percentage of patients who received potentially life-shortening drugs to alleviate symptoms and it increased the level of involvement of patients in deciding about the use of such drugs. The decreased use of potentially life-shortening drugs might partly be because of an actual decrease in opioid dosages. However, changed opinions about the impact of drugs, such as morphine or sedatives, in dying patients may also play a role, which might be either because of the use of the LCP or because of a general shift in attitudes during the previous years.

Our study had several limitations. First, patients were recruited at departments that volunteered to participate in the study because of their interest in end-of-life care and were probably not representative of all departments that provide end-of-life care in The Netherlands. Second, the three settings studied were represented by a limited number of institutions, and especially, the number of home care patients was rather small. Third, the hospital setting was among others represented by several university hospital departments, where patients might be admitted because of complex problems or because of an explicit preference for life-prolonging treatment.

We conclude that in all settings where cancer patients die, end-of-life decision making is an important aspect of end-of-life care. The impact and importance of such decision making is especially pronounced in the hospital setting. LCP use has a significant impact on the use of potentially life-shortening drugs during the dying phase.

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Acknowledgments 

The authors thank the Comprehensive Cancer Centre Rotterdam for the skilled assistance with the implementation of the LCP in the participating care settings. The authors also are very appreciative of the valuable contributions of the caregivers and the relatives to the study.

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