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Articles

Original Research

Preferences for Care near the End of Life according to Chronic Patients' Characteristics

Korean Journal of Adult Nursing 2013;25(2):207-218.
Published online: April 18, 2013

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Corresponding author: Kang, Jiyeon Department of Nursing, Dong-A University, 1 Dongdaesin-dong 3-ga, Seo-gu, Busan 602-714, Korea Tel: +82-51-240-2871, Fax: +82-51-240-2920, E-mail: jykang@dau.ac.kr
• Received: November 29, 2012   • Accepted: April 23, 2013

© 2013 Korean Society of Adult Nursing

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

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  • Purpose
    The purpose of this study was to explore the chronic patients' preferences for care near the end of life.
  • Methods
    This is a descriptive survey research, with subjects of 161 outpatients with hypertension, diabetes mellitus or chronic renal failure.
  • Results
    The majority of the subjects do not want meaningless life sustaining treatment and they report thinking positively about family or health care professional to participate in their end of life decision making process. Subjects reported preferring adequate pain management and spiritual support at the end of life. In regard to advance directives (ADs), those subjects with chronic disease report thinking positively about the necessity of ADs and its institutionalization. However, the subjects report not having the detailed information on the proper time and method of writing their ADs.
  • Conclusion
    Based on these results, educational programs on end of life decision making for chronic patients need to be developed. Also, the nurse should try to reflect the opinion of chronic patients as much as possible when make an end-of-life decision.
Table 1.
General and Disease related Characteristics of Subjects (N=161)
Characteristics Categories n (%) or M±SD
Gender Male 85 (52.8)
Female 76 (47.2)
Age (year)   58.90±9.84
≤50 29 (18.0)
51~60 62 (38.5)
>60 70 (43.5)
Marital status Married 123 (76.4)
Not married 11 (6.8)
Divorced/bereaved 27 (16.8)
Religion Yes 115 (71.5)
No 46 (28.5)
Education ≤Middle school 60 (37.3)
High school 53 (32.9)
≥College 48 (29.8)
Occupation Yes 68 (42.2)
No 93 (57.8)
Experience of acquaintances' death Yes 69 (42.9)
No 92 (57.1)
Relationship with acquaintance∗ Parents 31 (44.9)
Spouse 5 (7.2)
Sibling 9 (13.1)
Others 24 (34.8)
Caring experience for dying person Yes 28 (17.4)
No 133 (82.6)
Relationship with dying person Parents 17 (60.7)
Spouse 3 (10.7)
Sibling 5 (17.9)
Others 3 (10.7)
Written will Yes 7 (4.3)
No 154 (95.7)
Content of will Funeral arrangements 4 (57.1)
Inheritance matters Family 1 2 (14.3) (28.6)
Disease Hypertension 60 (37.2)
Diabetes 50 (31.1)
Chronic renal failure 51 (31.7)
Duration of illness(year) <1 23 (14.3)
1~5 57 (35.4)
6~10 30 (18.6)
>10 51 (31.7)
Experience of ICU admission Yes 35 (21.7)
No 126 (78.3)
Types of life sustaining treatment Ventilator 4 (11.4)
CPR 2 (5.7)
Artificial nutrition 1 (2.9)
Inotropic drugs 1 (2.9)
Intubation 1 (2.9)
Non 27 (77.1)

CPR=cardiopulmonary resuscitation; ICU=intensive care unit.

Missing cases excluded.

Table 2.
Advance Directives related Characteristics of Subjects (N=161)
Characteristics   Categories n (%)
Experience Meaning of ADs Know well 35 (21.7)
Heard about ADs, but do not know what a meaning 26 (16.1)
Never heard of ADs 100 (62.1)
Indirect experience about ADs Yes 1 (0.6)
No 160 (99.4)
Attitude Plan for preparing ADs Yes 80 (49.7)
No 25 (15.5)
Decided yet 56 (34.8)
Decision maker on ADs Patients 118 (73.3)
Health care provider 9 (5.6)
Spouse 16 (9.9)
Children 11 (6.8)
Others 7 (4.4)
Appropriate timing for preparing ADs Whenever healthy 56 (34.8)
Take a serious turn 43 (26.7)
Diagnosed as terminally ill 21 (13.0)
Admitted to hospital 18 (11.2)
Admitted to ICU 11 (6.8)
Near death 10 (6.2)
Do not know 2 (1.2)
Types of preparing ADs Verbal 74 (46.0)
Written document 65 (40.4)
Recording 11 (6.8)
Do not know 11 (6.8)
Necessity of ADs Strongly agree 20 (12.4)
Agree 123 (76.4)
Disagree 15 (9.3)
Strongly disagree 3 (1.9)
Necessity of legislation Agree 87 (54.0)
Disagree 20 (12.4)
Do not know 54 (33.5)

ADs=advance directives; ICU=intensive care unit.

Table 3.
Preferences for Care Near the End of Life among Patients with Chronic Disease (N=161)
Categories Items M±SD
Autonomous decision making If my heart stops, I do not want CPR 3.56±1.04
I do not want to be fed artificially 2.34±0.98
If I can no longer breathe on my own, I do not want to be connected to a breathing machine 3.78±0.94
I want to let nature guide my dying and I do not want my life to be artificially prolonged in any way 3.89±0.81
If my heart stops, I want to be CPR 2.42±1.03
I want to be fed through a tube when I can no longer take food or drink normally 3.66±0.93
I want to let God guide my dying and I do not want my life to be artificially prolonged in any way 3.80±0.86
If I can no longer breathe on my own, I want to be connected to a breathing machine 2.28±0.96
Subtotal 2.28±0.76
Decision making by health care professional I want health care providers to make all care decisions 3.14±1.02
Health care providers knows what is best for me at this time and I want to make all decisions about my care 3.32±0.99
I want my doctor to make health care decision 3.19±1.02
Health care providers, because they are experts, should have the final word in decisions about my care 3.42±0.92
Subtotal 3.27±0.88
Spirituality I want my spiritual beliefs to guide my preferences 2.98±1.09
I want my religious beliefs to guide my preferences care at this time 2.87±1.09
I want nurses who attend to my emotional and spiritual needs as my physical needs 3.65±0.73
I want to be able to talk to someone about my spiritual needs 2.90±1.06
I want have hospice care 3.50±0.90
I want to my nurse to talk to me about my spiritual needs 2.79±1.02
Subtotal 3.11±0.76
Family input to decision making I want my family to make all decisions about my care when I can no longer verbally express my desires 3.66±0.90
I want to my family to have the final word in decisions about my care 3.57±0.92
I want my family to be involved in my health care decisions 3.91±0.57
I want all explanations given to my family so they can decide on my care 3.71±0.85
My family knows what is best for me at this time and I want to make all decisions about my care 3.57±0.91
Subtotal 3.68±0.73
Pain I want to be free of pain even if it hastens my death 4.04±0.60
I want health care providers to deal with the details of my care 3.95±0.47
I want an early death instead of suffering 3.78±0.79
Subtotal 3.92±0.44

CPR=cardiopulmonary resuscitation.

Table 4.
Preference for Care Near the End of Life according to Characteristic of Subjects (N=161)
Characteristics Categories Autonomous decision making Decision making by health care professional Spirituality Family input to decision making Pain
M±SD t or F p M±SD t or F p M±SD t or F p M±SD t or F p M±SD t or F p
Gender Male 2.36±0.77 1.37 .174 3.41±0.89 2.27 .024 3.01±0.77 -1.94 .054 3.76±0.69 1.34 .182 3.90±0.50 -0.66 .513
Female 2.19±0.73     3.10±0.85     3.24±0.73     3.60±0.77     3.95±0.36    
Age (year) <50 2.40±0.78 0.91 .364 2.95±0.82 -2.17 .031 3.15±0.80 0.26 .797 3.60±0.69 -0.72 .478 3.75±0.65 -1.72 .096
≥50 2.26±0.75     3.34±0.88     3.11±0.75     3.70±0.74     3.96±0.37    
Religion Yes 2.26±0.79 -0.78 .436 3.26±0.89 -0.09 .927 3.34±0.75 8.27 <.001 3.69±0.76 0.12 .908 3.99±0.43 2.91 .004
No 2.36±0.66     3.28±0.88     2.56±0.42     3.67±0.65     3.77±0.42    
Education ≤Middle school 2.28±0.72 0.54 .581 3.21±0.91 0.18 .832 3.08±0.64 0.14 .866 3.72±0.70 0.24 .790 3.98±0.34 0.74 .479
≥High school 2.21±0.69     3.31±0.89     3.11±0.72     3.63±0.79     3.89±0.47    
≥College 2.37±0.87     3.29±0.86     3.16±0.93     3.70±0.70     3.90±0.51    
Occupation Yes 2.36±0.82 1.14 .258 3.43±0.87 2.02 .045 3.15±0.83 0.52 .607 3.69±0.73 2.02 .886 3.95±0.47 0.56 .576
No 2.23±0.71     3.15±0.88     3.09±0.71     3.68±073     3.91±0.42    
Indirect experience about death Yes 2.24±0.74 -0.69 .491 3.29±0.89 0.28 .778 3.18±0.77 0.99 .322 3.81±0.68 1.93 .055 3.97±0.39 2.25 .234
No 2.32±0.77     3.25±0.88     3.06±0.75     3.59±0.75     3.89±0.47    
Living will Yes 1.98±0.86 -1.08 .280 3.61±1.24 1.04 .299 4.19±0.71 4.01 <.001 4.14±0.78 4.01 .089 4.33±0.61 -0.14 .011
No 2.30±0.75     3.25±0.87     3.07±0.73     3.66±0.72     3.90±0.42    
Disease Hypertension 2.25±0.79 0.14 .874 3.12±0.91 1.58 .209 3.22±0.79 3.01 .520 3.55±0.81 1.87 .158 4.00±0.38 1.30 .029
Diabetes 2.28±0.82     3.29±0.94     3.21±0.76     3.72±0.75     3.97±0.43   (a>c)
CRF 2.33±0.65     3.42±0.78     2.90±0.69     3.81±0.58     3.79±0.48    
Period (year) <10 2.19±0.69 -2.24 .028 3.20±0.89 -1.47 .144 3.02±0.76 -2.33 .021 3.69±0.74 0.26 .798 3.98±0.38 3.61 .027
≥10 2.49±0.85     3.42±0.87     3.32±0.74     3.66±0.71     3.80±0.53    
Experience of ICU admission Yes 2.60±0.83 2.85 .005 3.36±0.86 0.68 .497 3.12±0.68 0.08 .938 3.91±0.47 0.08 .006 3.91±0.37 1.20 .890
No 2.20±0.71     3.24±0.89     3.11±0.78     3.62±0.78     3.92±0.46    

CRF=Chronic Renal Failure; ICU=Intensive Care Unit.

Scheffé's multiple comparison test.

Table 5.
Comparison of PCEOL according to Necessity and Main Agent of ADs (N=161)
Categories Necessity of ADs t p Main agent of ADs t p
Agree Disagree Self Others
M±SD M±SD M±SD M±SD
Autonomous decision making 2.28±0.72 2.30±1.01 -0.12 .903 2.19±0.68 2.53±0.89 -2.26 .028
Decision making by health care professional 3.20±0.87 3.76±0.89 -2.58 .011 3.10±0.89 3.72±0.70 -4.66 <.001
Spirituality 3.11±0.75 3.16±0.88 -0.25 .802 3.20±0.76 2.86±0.70 2.66 .009
Family 3.69±0.70 3.68±0.97 0.03 .975 3.59±0.76 3.93±0.58 -2.97 .004
Pain 3.92±0.43 3.96±0.53 -0.41 .686 3.92±0.43 3.93±0.47 -0.12 .905

PCEOL=preference for care near the end of life; ADs=advance directives.

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      Preferences for Care near the End of Life according to Chronic Patients' Characteristics
      Korean J Adult Nurs. 2013;25(2):207-218.   Published online April 30, 2013
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      Preferences for Care near the End of Life according to Chronic Patients' Characteristics
      Korean J Adult Nurs. 2013;25(2):207-218.   Published online April 30, 2013
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      Preferences for Care near the End of Life according to Chronic Patients' Characteristics
      Preferences for Care near the End of Life according to Chronic Patients' Characteristics

      General and Disease related Characteristics of Subjects (N=161)

      Characteristics Categories n (%) or M±SD
      Gender Male 85 (52.8)
      Female 76 (47.2)
      Age (year)   58.90±9.84
      ≤50 29 (18.0)
      51~60 62 (38.5)
      >60 70 (43.5)
      Marital status Married 123 (76.4)
      Not married 11 (6.8)
      Divorced/bereaved 27 (16.8)
      Religion Yes 115 (71.5)
      No 46 (28.5)
      Education ≤Middle school 60 (37.3)
      High school 53 (32.9)
      ≥College 48 (29.8)
      Occupation Yes 68 (42.2)
      No 93 (57.8)
      Experience of acquaintances' death Yes 69 (42.9)
      No 92 (57.1)
      Relationship with acquaintance∗ Parents 31 (44.9)
      Spouse 5 (7.2)
      Sibling 9 (13.1)
      Others 24 (34.8)
      Caring experience for dying person Yes 28 (17.4)
      No 133 (82.6)
      Relationship with dying person Parents 17 (60.7)
      Spouse 3 (10.7)
      Sibling 5 (17.9)
      Others 3 (10.7)
      Written will Yes 7 (4.3)
      No 154 (95.7)
      Content of will Funeral arrangements 4 (57.1)
      Inheritance matters Family 1 2 (14.3) (28.6)
      Disease Hypertension 60 (37.2)
      Diabetes 50 (31.1)
      Chronic renal failure 51 (31.7)
      Duration of illness(year) <1 23 (14.3)
      1~5 57 (35.4)
      6~10 30 (18.6)
      >10 51 (31.7)
      Experience of ICU admission Yes 35 (21.7)
      No 126 (78.3)
      Types of life sustaining treatment Ventilator 4 (11.4)
      CPR 2 (5.7)
      Artificial nutrition 1 (2.9)
      Inotropic drugs 1 (2.9)
      Intubation 1 (2.9)
      Non 27 (77.1)

      CPR=cardiopulmonary resuscitation; ICU=intensive care unit.

      Missing cases excluded.

      Advance Directives related Characteristics of Subjects (N=161)

      Characteristics   Categories n (%)
      Experience Meaning of ADs Know well 35 (21.7)
      Heard about ADs, but do not know what a meaning 26 (16.1)
      Never heard of ADs 100 (62.1)
      Indirect experience about ADs Yes 1 (0.6)
      No 160 (99.4)
      Attitude Plan for preparing ADs Yes 80 (49.7)
      No 25 (15.5)
      Decided yet 56 (34.8)
      Decision maker on ADs Patients 118 (73.3)
      Health care provider 9 (5.6)
      Spouse 16 (9.9)
      Children 11 (6.8)
      Others 7 (4.4)
      Appropriate timing for preparing ADs Whenever healthy 56 (34.8)
      Take a serious turn 43 (26.7)
      Diagnosed as terminally ill 21 (13.0)
      Admitted to hospital 18 (11.2)
      Admitted to ICU 11 (6.8)
      Near death 10 (6.2)
      Do not know 2 (1.2)
      Types of preparing ADs Verbal 74 (46.0)
      Written document 65 (40.4)
      Recording 11 (6.8)
      Do not know 11 (6.8)
      Necessity of ADs Strongly agree 20 (12.4)
      Agree 123 (76.4)
      Disagree 15 (9.3)
      Strongly disagree 3 (1.9)
      Necessity of legislation Agree 87 (54.0)
      Disagree 20 (12.4)
      Do not know 54 (33.5)

      ADs=advance directives; ICU=intensive care unit.

      Preferences for Care Near the End of Life among Patients with Chronic Disease (N=161)

      Categories Items M±SD
      Autonomous decision making If my heart stops, I do not want CPR 3.56±1.04
      I do not want to be fed artificially 2.34±0.98
      If I can no longer breathe on my own, I do not want to be connected to a breathing machine 3.78±0.94
      I want to let nature guide my dying and I do not want my life to be artificially prolonged in any way 3.89±0.81
      If my heart stops, I want to be CPR 2.42±1.03
      I want to be fed through a tube when I can no longer take food or drink normally 3.66±0.93
      I want to let God guide my dying and I do not want my life to be artificially prolonged in any way 3.80±0.86
      If I can no longer breathe on my own, I want to be connected to a breathing machine 2.28±0.96
      Subtotal 2.28±0.76
      Decision making by health care professional I want health care providers to make all care decisions 3.14±1.02
      Health care providers knows what is best for me at this time and I want to make all decisions about my care 3.32±0.99
      I want my doctor to make health care decision 3.19±1.02
      Health care providers, because they are experts, should have the final word in decisions about my care 3.42±0.92
      Subtotal 3.27±0.88
      Spirituality I want my spiritual beliefs to guide my preferences 2.98±1.09
      I want my religious beliefs to guide my preferences care at this time 2.87±1.09
      I want nurses who attend to my emotional and spiritual needs as my physical needs 3.65±0.73
      I want to be able to talk to someone about my spiritual needs 2.90±1.06
      I want have hospice care 3.50±0.90
      I want to my nurse to talk to me about my spiritual needs 2.79±1.02
      Subtotal 3.11±0.76
      Family input to decision making I want my family to make all decisions about my care when I can no longer verbally express my desires 3.66±0.90
      I want to my family to have the final word in decisions about my care 3.57±0.92
      I want my family to be involved in my health care decisions 3.91±0.57
      I want all explanations given to my family so they can decide on my care 3.71±0.85
      My family knows what is best for me at this time and I want to make all decisions about my care 3.57±0.91
      Subtotal 3.68±0.73
      Pain I want to be free of pain even if it hastens my death 4.04±0.60
      I want health care providers to deal with the details of my care 3.95±0.47
      I want an early death instead of suffering 3.78±0.79
      Subtotal 3.92±0.44

      CPR=cardiopulmonary resuscitation.

      Preference for Care Near the End of Life according to Characteristic of Subjects (N=161)

      Characteristics Categories Autonomous decision making Decision making by health care professional Spirituality Family input to decision making Pain
      M±SD t or F p M±SD t or F p M±SD t or F p M±SD t or F p M±SD t or F p
      Gender Male 2.36±0.77 1.37 .174 3.41±0.89 2.27 .024 3.01±0.77 -1.94 .054 3.76±0.69 1.34 .182 3.90±0.50 -0.66 .513
      Female 2.19±0.73     3.10±0.85     3.24±0.73     3.60±0.77     3.95±0.36    
      Age (year) <50 2.40±0.78 0.91 .364 2.95±0.82 -2.17 .031 3.15±0.80 0.26 .797 3.60±0.69 -0.72 .478 3.75±0.65 -1.72 .096
      ≥50 2.26±0.75     3.34±0.88     3.11±0.75     3.70±0.74     3.96±0.37    
      Religion Yes 2.26±0.79 -0.78 .436 3.26±0.89 -0.09 .927 3.34±0.75 8.27 <.001 3.69±0.76 0.12 .908 3.99±0.43 2.91 .004
      No 2.36±0.66     3.28±0.88     2.56±0.42     3.67±0.65     3.77±0.42    
      Education ≤Middle school 2.28±0.72 0.54 .581 3.21±0.91 0.18 .832 3.08±0.64 0.14 .866 3.72±0.70 0.24 .790 3.98±0.34 0.74 .479
      ≥High school 2.21±0.69     3.31±0.89     3.11±0.72     3.63±0.79     3.89±0.47    
      ≥College 2.37±0.87     3.29±0.86     3.16±0.93     3.70±0.70     3.90±0.51    
      Occupation Yes 2.36±0.82 1.14 .258 3.43±0.87 2.02 .045 3.15±0.83 0.52 .607 3.69±0.73 2.02 .886 3.95±0.47 0.56 .576
      No 2.23±0.71     3.15±0.88     3.09±0.71     3.68±073     3.91±0.42    
      Indirect experience about death Yes 2.24±0.74 -0.69 .491 3.29±0.89 0.28 .778 3.18±0.77 0.99 .322 3.81±0.68 1.93 .055 3.97±0.39 2.25 .234
      No 2.32±0.77     3.25±0.88     3.06±0.75     3.59±0.75     3.89±0.47    
      Living will Yes 1.98±0.86 -1.08 .280 3.61±1.24 1.04 .299 4.19±0.71 4.01 <.001 4.14±0.78 4.01 .089 4.33±0.61 -0.14 .011
      No 2.30±0.75     3.25±0.87     3.07±0.73     3.66±0.72     3.90±0.42    
      Disease Hypertension 2.25±0.79 0.14 .874 3.12±0.91 1.58 .209 3.22±0.79 3.01 .520 3.55±0.81 1.87 .158 4.00±0.38 1.30 .029
      Diabetes 2.28±0.82     3.29±0.94     3.21±0.76     3.72±0.75     3.97±0.43   (a>c)
      CRF 2.33±0.65     3.42±0.78     2.90±0.69     3.81±0.58     3.79±0.48    
      Period (year) <10 2.19±0.69 -2.24 .028 3.20±0.89 -1.47 .144 3.02±0.76 -2.33 .021 3.69±0.74 0.26 .798 3.98±0.38 3.61 .027
      ≥10 2.49±0.85     3.42±0.87     3.32±0.74     3.66±0.71     3.80±0.53    
      Experience of ICU admission Yes 2.60±0.83 2.85 .005 3.36±0.86 0.68 .497 3.12±0.68 0.08 .938 3.91±0.47 0.08 .006 3.91±0.37 1.20 .890
      No 2.20±0.71     3.24±0.89     3.11±0.78     3.62±0.78     3.92±0.46    

      CRF=Chronic Renal Failure; ICU=Intensive Care Unit.

      Scheffé's multiple comparison test.

      Comparison of PCEOL according to Necessity and Main Agent of ADs (N=161)

      Categories Necessity of ADs t p Main agent of ADs t p
      Agree Disagree Self Others
      M±SD M±SD M±SD M±SD
      Autonomous decision making 2.28±0.72 2.30±1.01 -0.12 .903 2.19±0.68 2.53±0.89 -2.26 .028
      Decision making by health care professional 3.20±0.87 3.76±0.89 -2.58 .011 3.10±0.89 3.72±0.70 -4.66 <.001
      Spirituality 3.11±0.75 3.16±0.88 -0.25 .802 3.20±0.76 2.86±0.70 2.66 .009
      Family 3.69±0.70 3.68±0.97 0.03 .975 3.59±0.76 3.93±0.58 -2.97 .004
      Pain 3.92±0.43 3.96±0.53 -0.41 .686 3.92±0.43 3.93±0.47 -0.12 .905

      PCEOL=preference for care near the end of life; ADs=advance directives.

      Table 1. General and Disease related Characteristics of Subjects (N=161)

      CPR=cardiopulmonary resuscitation; ICU=intensive care unit.

      Missing cases excluded.

      Table 2. Advance Directives related Characteristics of Subjects (N=161)

      ADs=advance directives; ICU=intensive care unit.

      Table 3. Preferences for Care Near the End of Life among Patients with Chronic Disease (N=161)

      CPR=cardiopulmonary resuscitation.

      Table 4. Preference for Care Near the End of Life according to Characteristic of Subjects (N=161)

      CRF=Chronic Renal Failure; ICU=Intensive Care Unit.

      Scheffé's multiple comparison test.

      Table 5. Comparison of PCEOL according to Necessity and Main Agent of ADs (N=161)

      PCEOL=preference for care near the end of life; ADs=advance directives.

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