QJM Advance Access originally published online on June 12, 2007
QJM 2007 100(7):433-440; doi:10.1093/qjmed/hcm042
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‘No control whatsoever’: end-of-life care on a medical teaching unit from the perspective of family members
From the Division of General Internal Medicine, QEII Health Science Centre, Halifax, Nova Scotia, Canada
Address correspondence to Dr S. Workman, Division of General Internal Medicine, QEII Health Science Centre, Halifax, Nova Scotia, Canada. email: sworkman{at}dal.ca
Received 4 January 2007 and in revised form 12 March 2007
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Summary |
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 Top Summary IntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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Background: In our institution, about one third of annual deaths occur on the general medical teaching unit. (MTU) The average patient dies on the MTU from non-malignant disease after 4 weeks in hospital, and approximately 20% of available beds on the MTU at any time are occupied by patients who will not survive to discharge, but quality of end-of-life care on the MTU is not routinely assessed.
Aim: To identify areas for improvement in delivering high quality end-of-life care on the medical teaching unit.
Design: Qualitative study using semi-structured interviews.
Methods: Six months after the death of the patient, next of kin were sent a letter inviting participation; 75 family members were screened and 50 invitations were mailed out. Interviews were conducted in the home. Eliciting narratives and direct questioning about important aspects of end-of-life care were used.
Results: Six next of kin agreed to participate. All patients were described as seriously and chronically ill. None died of cancer. Deaths were not described as ‘good’, and some comments suggested that death was unexpected and not inevitable. There were few concerns about pain control or unnecessary suffering. Proactive efforts to provide prognostic information or end-of-life care were not described. Survival, not palliation, was of central importance. Consistent with this priority, satisfaction with care provided in the intensive care unit was high. Follow-up after death was desired, especially if autopsy results were available.
Discussion: Earlier discussions about treatment failure and end-of-life care, and the need for palliation, appear to be central to improving the quality of end-of-life care for patients dying on our medical teaching unit. Our results are consistent with other studies in this area.
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Introduction |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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In its first editorial of the new century, an editorial in the British Medical Journal argued that ‘medicine does not give the attention it should to helping people die a good death.’1 If this is true, in hospital deaths need more attention: in Canada and the UK,2 over half of all deaths occur in hospital. In the US, 40% of deaths occur in hospital; half involve treatment in an intensive care unit.3
There are 2000 or so deaths each year in our health care district. Of these, 1200 are in hospital, with 350 deaths on the medical teaching units, the most of any service. The average fatal admission is 28 days and at any time 15–20 beds on the 90-bed medical teaching unit are occupied by patients that die in hospital. Despite this commitment of resources, beyond chart reviews, the care that dying patients and their families receive on our medical teaching unit is not routinely evaluated or subject to quality improvement efforts. A better understanding of the experience of patients dying on the medical teaching unit, as retrospectively reported by their family members, and of family members themselves, could be used to improve end-of-life care for patients and families.
There are moral and practical reasons to focus quality improvement efforts in this area. First, the needs of patients dying of non-malignant disease are easily overlooked.4 Second, deficiencies in the care of dying patients can never be championed by those who most need them. Third, over half of complaints to the National Health Service involve care around death.5 Finally, dying patients are among the most vulnerable in our society. The care they receive is an important measure of the health-care system itself.6
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Methods |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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This study was conducted at the QEII HSC, a 1000 bed tertiary care institution in Halifax, Nova Scotia, Canada. Next of kin, as recorded on patients’ charts, were invited, via a personalized letter, to participate in an interview 6–8 months after the death of the patient (Appendix 1). (Early in the study, one family member was upset at being contacted, so for subsequent patients, the family physician for the deceased patient was asked whether he knew the next of kin, and whether they could be invited to participate.) The rationale for using narrative data to obtain a full and rich description of complex phenomena or experience has been described elsewhere.7 This study was approved by the local Research Ethics Board.
Recruitment
Sixty-five family members received a written invitation to participate. Exclusion criteria included a hospital stay of <48 h, and failure to obtain permission from the family physician of the deceased to contact next of kin to invite participation (approximately 25 next of kin were excluded for this reason.) Family members of six patients agreed to participate. Potential participants could contact one of three general internists if they wished to receive further information about the study (Appendix 2), but none did so.
Data collection
Family members were asked to describe their experiences’ with their relative's in-hospital death. A semi-structured interview guide was followed. (Appendix 3) A narrative description of the experience was followed with specific questions about previously described elements of a ‘good death’.1
Data analysis
Interviews were analysed by a research assistant experienced in qualitative research and by the primary investigator (SW). Data were analysed in three steps. First, each interview was read multiple times to become thoroughly familiar with the content. Second, key themes or issues were developed from the narrative portion of each interview by the research assistant using the software, and by the primary researcher. Next, comparison of key themes between interviews allowed development of the data presented in this study. These themes and the data they evolved from were then presented to co-authors for validation.
The interview
Interviews took from 45 min to 1 hour 15 min. For three interviews, two family members were present.
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Results |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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Participants described chronically close family members who died during or shortly after a trial of life-sustaining treatments. Reported length of stays ranged from 4 days to 5 weeks. Three patients died in the intensive care unit, one in the intermediate care unit located on one of the medical teaching units, and two on the medical ward.
The experience of family members was described as stressful and traumatic. Four key opportunities for improvement were identified. First, communication about death could be strengthened. For example, family members did not describe being systematically prepared for death as a possibility or an eventuality. Second, palliative treatments were felt to be in opposition to curative care. Third, families who had a loved one cared for in the ICU felt that the treatment there was better and more satisfying. Finally several family members wanted follow-up communication by the attending physician, including discussing the autopsy results, if available.
For each interview, a brief case description is followed by a quote intended to help the reader appreciate the experience for the next of kin. This section is followed by quotes supporting the main findings.
Case summaries and globally descriptive quotes
Patient 1
The patient had recently been discharged after a long convalescence in hospital. The patient was described as being admitted in extremis four days earlier.
I went to the nurses station and they just all came in, and I said ‘Do something, they’re not breathing!’ They said ‘We can't, there is nothing we can do, they’re gone’. I said ‘Gone where? ’ I didn't understand what they were telling me ... I feel that they didn't do anything; they felt her age and the fact that she had been through a stroke and that it wasn't worth the effort, the time or the money to save her ... I had not an inkling that she could have died and when she did it was an awful shock ...
Patient 2
An elderly patient with severe rheumatoid arthritis was admitted due to progressive decline with weakness and weight loss. They had been receiving monthly blood transfusions for three years prior to admission.
I: Tell me about that last time, just before she died in the hospital.
P: Well, I knew she wouldn't come out. And it was pretty traumatic ... .They put a tube down her nose, she kept pulling it out. Umm, I signed the papers for that.
I: So they came out of the nose accidentally do you think?
P: No, on purpose.
I: Oh. Why do you think?
P: She didn't want them in.
I, Interviewer; P, participant.
Patient 3
Family member of a patient who suffered from progressive respiratory failure thought due to an underlying and progressive lung disease.
P: I felt in control in the ICU, I did not feel in control whatsoever in the regular hospital (MTU).
I: How would you describe that how you felt when she was in the regular hospital?
P: It was very frustrating and scary at the same time because I just felt that more could be done, more time should be given to her because she was so sick and she wasn't getting better.
Patient 4
A lung cancer survivor with progressive weakness for several months and intermittent delirium, who subsequently developed pneumonia.
The night he died I told him I’ll go home now. I asked the nurse ‘Is he ok?’ And she said ‘You go home because we got his heart just where we want it.’ And she was the same nurse that had chewed me out earlier but I don't blame her for telling me to go home. She didn't know he had a multi organ failure. I came back around that night and he died two hours later.
Patient 5
A 75-year-old man with recently diagnosed with liver failure, renal failure, arthritis, who was ventilator-dependent and delirious.
After they made the diagnosis, they transferred him to the ICU. They kept him alive for five weeks with dialysis. That was the five weeks from hell. Hell for the whole family ...
Patient 6
A young patient with severe progressive respiratory disease was described. The patient had almost died during a previous hospitalization in the year prior
P: So when the realization [of death] struck, ultimately I think there was a week where my wife and I knew there was no recovery although we had thought that once before. And then probably in the last 24 hours we really knew.
I: What was that experience like for you?
P: Well obviously a horrible experience.
Communication about death and dying
Patients all suffered from severe progressive illnesses. Despite this family members and patients did not describe being well prepared for the possibility of the patient dying. Four of six families viewed the death as unexplained and unexpected. Some quotes implied that the death was seen as potentially preventable.
Patient 2
She had gastrointestinal problems. What were they? And all we were left with was she had a form of cirrhosis of the liver... We agreed to an autopsy because we wanted answers because my mother had a lot of health issues and we didn't get anything.
Patient 3
You have to realize that when they are in there (IMCU) they may be dying and at this time she was dying but nobody knew... A month after she passed it would have been helpful for a doctor to sit down and explain why she died. I still had unanswered questions.
Patient 4
I knew he was in bad shape because they said his sats were low ... but anyway I didn't realize (he could die) because the other times he had always rallied around ... So the last day I asked the doctor was there ever a diagnosis of what was wrong and he said we feel it had to be pneumonia but he never really had any symptoms of pneumonia.
One family member discerned the prognosis several weeks before the patient died but was not given any prognostic information.
Patient 5
I read about it (the disease) and figured it out. When all of your organs fail what else is there? ... They told me they were going to try to cure one ailment at a time. Well you can't bring back a liver.
In the only description of this sort, one family member was told the patient could die, although repeating this information was considered unnecessary.
The doctor on call in the ICU said ‘You know she could die’ which was good information. It let us know just how serious it was but after a few more times I thought ‘You don't have to keep repeating it’
One description of heartfelt communication before death was provided:
Patient 5
I had two hours with him alone and he could talk. It was the most incredible two hours I ever spent. We told each other things that we had told each other before but never with such meaning.
This was the only deathbed conversation described. Other quotes demonstrate that communication about death and dying was limited.
Patient 1
No, no, we never spoke about it. Mom was terrified of death. She never talked about her own personal death. The fear of it was just ... her fear of death was very deep.
Patient 4
My husband said, ‘One of the nurses told me I was going to, you know.’ And I said ‘What’? And he said ‘You know.’ So I think that's probably why he was so upset, the nurse told him he was going to die and I think it upset him.
Patient 6
So we asked the doctor not to tell the patient that they were dying ... I mean what was the point in getting [the patient] so upset?
Palliative vs. curative
Comments from family members suggested that palliative treatments were considered equivalent to giving up and could cause death rather than ensure comfort.
Patient 1
They just pumped her full of morphine and it killed her as far as I’m concerned. She didn't have another stroke and they told me she didn't have a blood clot in her leg, so why did she stop breathing?
Patient 2
Going home was not an option. I didn't think she was dying and no one told me she was dying. I wouldn't have wanted to open her bedroom door in the morning and found her dead in bed but I didn't expect her to be dying, and I didn't think what she was going through was going to be dying.
Patient 3
No, I am 100% against palliative care: you know that there is no hope that they have given up on treatment. Basically they have given up given up on everything it's just a matter of time. I think it would have been more difficult for me if they had put [the patient] in palliative care and that was it.
Satisfaction with treatment in the intensive care unit vs. the medical teaching unit
Three patients received care in the intensive care unit, and two died there although they spent the majority of their admission on the MTU. Care in the ICU was perceived to be of a higher quality and more personal.
Patient 3
She was moved to the ICU and that was a whole new world. If all the nurses and all the doctors were as gentle and caring ... I felt in control in the ICU, I did not feel in control what so ever in the regular hospital.
Patient 5
The medical ward, I think it's a zoo. The nurses in the ICU do what nurses use to do years ago; they actually give you a bed bath ... and I must say that the people in the ICU were very kind, very understanding.
Care after death
When asked, family members felt a follow up phone call three or four weeks after death, ideally by the attending physician, was appropriate and desirable, especially if autopsy results were available. One family member described a feeling of abandonment at the time of death.
Patient 2
When you agree to an autopsy, which you are kind of one way or the other, it's not something that is easily agreed upon to do to somebody but we wanted answers because my mother had a lot of health issues and we didn't get anything.
Patient 1
And there was no one, no doctor came, just this little medical student who was as sad as I was. The student stayed, and a nurse did ask, ‘Do you want an autopsy?’ Which we refused but it was just so empty.
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Discussion |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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Based upon current recommendations and previous studies of patient preferences,1,8–10 it would be difficult to describe the deaths of these six patients as ‘good’, with perhaps one exception—the final hours of a patient that died in the intensive care unit after being disconnected from a ventilator at this request. (Having control over the time and manner of death has been previously shown to be beneficial to family members.11)
Considering the likelihood that a patient may die has the potential to improve end-of-life care.12 For the most part, efforts to fully communicate such information were not described. Routinely inviting family members and patients to discuss prognosis, and advising them when death appears to be a possible or probable outcome could help overcome prognostic uncertainty as a barrier to end-of-life care for patients at risk of dying. The potentially false dichotomy of care vs. cure should also be addressed. Efforts to ensure comfort and dignity should be provided alongside curative treatments.
All patients and their family members had contact with the health-care system for many years prior to admission, but previous efforts to address end-of-life care were not described. Other studies have noted this deficiency, especially for patients dying of diseases other than cancer.13–15
The satisfaction family members expressed about treatment received in the ICU may arise from knowing that ‘everything possible’ is being done. Admitting patients to the ICU also likely acts as a stimulus to address end-of-life care. The ICU also has more resources available per patient. (Each patient in the ICU also has a dedicated nurse, a staff ratio that will never be obtained on medical teaching wards.) A recent study found a systematic communication approach based upon attentive listening reduced post-traumatic stress in family members of patients who died in the ICU from 70% to 45% at 3 months.16 It is likely that a similar communication intervention could benefit many family members of patients dying on medical teaching units.
Prognostic assessments are important, but must be done carefully. Variation in prognostic information and lack of time to prepare for death commonly give rise to complaints about care at the end of life.5 While not all patients or their families will want to discuss prognosis,17 several studies suggest that routinely talking about end-of-life care at or around the time of admission is welcome.18,19 Processes of care that encourage prognostic assessments and proactive communication about death and dying, along with attentive listening, should be instituted in medical teaching units.
Limitations
The small sample size may have resulted in significant concerns not being identified. Selection bias at several levels may also have skewed the results. Family members who were satisfied with care may have been less motivated to participate. (Conversely, family members who were particularly traumatized may have been excluded by themselves or their family physicians.) Given the small sample size, other important deficiencies and strengths may exist that were not captured by this study.
Conclusions
The results of this small study suggest that effectively communicating and managing prognostic uncertainty is important to ensuring a good death in hospital. The results of this study are consistent with the results of a questionnaire study that sampled a similar population.2 The following steps could improve end-of-life care on the medical teaching unit: (i) Consider, and carefully communicate, prognostic uncertainty, to patients, their family members and other members of the health care team. (ii) Facilitate communication between patients and their family members about death and dying whenever possible. Listen attentively to their concerns. (iii) Proactively address the false dichotomy between palliative and curative treatments. (iv) Make plans to contact family members a few weeks after the death of a patient to see if they have any further questions or concerns and to provide autopsy findings if available.
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Appendix 1: Invitation letter |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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Dear ...
We invite you to participate in a study entitled: ‘Families Perception of End-of-Life-Care’.
Physicians within the division of General Internal Medicine frequently care for dying patients and their families. In order to help us provide the best care possible, we are asking to interview family members of patients who have died in hospital. The information we gain from these interviews will help us provide the very best care possible for patients and their family members. Would you consider helping us with this study?
We understand if you do not wish to participate and have included a response and a self addressed stamped envelope. You have three options:
First, you can choose to participate in the study. If this is the case, we will contact you to schedule a time for an interview.
Second, if you are unsure, Dr Workman or one of the other physicians involved in the study, Drs. Simpson, or Mann, could speak with you to answer any further questions you may have.
Third, if you do not wish to participate please let us know. We will not contact you again.
We wish to express our condolences for the loss of your ... . It is our hope that the results of this study will help us care for patients and their families.
Yours truly,
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Appendix 2: Family response options |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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Study: Families Perception of End-of-Life-Care
Please check one of the following:
Yes, I wish to participate in the study.
I am unsure, I would like further information.
I would like to receive a phone call from:
No, I do not wish to participate in the study.
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Appendix 3: Interview Guide |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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Interview Guide
Demographics (To be appended to the consent form, mailed to participants prior to the interview, they will complete and bring to interview.)
Please answer the following questions. You do not need to answer all the questions if you do not wish to do so.
Name:
Address:
Phone:
Age:
Religion:
Sex: ____ Male ____ Female
Relationship with deceased family member:
Income (please circle one):
Education (please circle one):
Cultural or minority group member? Yes__ No__ If yes, what group?
Location:
Distance to hospital:
Interview Guide – Intro
Thank you very much for agreeing to participate in this research project. We are grateful that people such as yourself are willing to discuss this sensitive topic with us. Have you read the consent form? Do you have any questions about it? I would like to explain the reason for this study before we begin. (See purpose of study, consent form.)
Narrative overview of illness/establish rapport
When did your family member become ill?
Tell me about his/her illness. What happened?
What was the experience like for you?
Hospitalization
Tell me about you and your family members' experiences during their last hospital admission?
What things were helpful? Not helpful?
Do you have any regrets from this time?
Expectations—What were your expectations at the time of admission. What did you think was going to happen? When and how did your expectations change?
Can you tell me about the hospital personnel caring for your loved one?
Nurses
Physicians
Pastoral care
Social work
Other
What aspects of the care would you want to ensure stays the same? Why?
What do you think should change? Why?
Follow up
Would you have wanted some form of follow up? If so after what amount of time? (3 days, week, month, other)
What type of follow up?
Phone call from a physician involved or head nurse and/or a health care professional in the care, card, questionnaire, telephone number to call?
Logistics
What was your experience getting to and from the hospital?
Were there financial burdens or other problems that made it hard for you to visit?
Twelve Principles
A group of experts has suggested 12 things that they felt should be considered very important when caring for dying patients, but we do not know how important family members consider them. We would like to ask you about these 12 principles. Please tell us what you think of them and if they applied in this case.
In some instances the information may already have been covered in the interview.
Was the death expected?
Did you feel in control? Why or why not?
Was dignity maintained? What does dignity mean to you? Did you have enough privacy?
Was pain control a problem?
Did the option of death at home come up? Where did you want the death to occur?
Did you feel you had enough information?
From whom did you receive spiritual and emotional support?
Did you have control over who was present?
Did your loved one have advance directives? Were they followed?
Would you have wanted hospice care rather than hospital care?
Did you have a chance to say goodbye?
Did you feel your loved one's life was needlessly prolonged?
Wrap up of interview
What advice, if any, would you give the doctors and nurses who cared for you and your spouse. To the hospital?
Do you have anything else you would like to add?
Interview closure
Thanks so much for participating. I will call you in a week's time to see if you have any further questions and to ask if you wish to see a copy of the interview transcript. Please call the numbers on the consent form if you have further questions.
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Acknowledgements |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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We wish to thank the interviewer, who handled the interviews in a dignified and compassionate manner, and Robin Latta, who assisted with data analysis. And of course the family members who chose to revisit their experiences with the hope of improving care for other patients in the future. For their assistance, we are very grateful.
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References |
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TopSummaryIntroductionMethodsResultsDiscussionAppendix 1: Invitation letterAppendix 2: Family response...Appendix 3: Interview GuideAcknowledgementsReferences |
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16. Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med (2007) 356:469–78.
17. Fried TR, Bradley EH, O’Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc (2003) 51:1398–403.[CrossRef][Web of Science][Medline]
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19. Lofmark R, Nilstun T. Not if, but how: one way to talk with patients about forgoing life support. Postgrad Med J (2000) 76:26–8.
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