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Research:
Daren K. Heyland, Peter Dodek, Graeme Rocker, Dianne Groll, Amiram Gafni, Deb Pichora, Sam Shortt, Joan Tranmer, Neil Lazar, Jim Kutsogiannis, Miu Lam for the Canadian Researchers End-of-Life Network(CARENET)
What matters most in end-of-life care: perceptions of seriously ill patients and their family members
CMAJ 2006; 174: 627-633 [Abstract] [Full text] [PDF]
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Electronic letters published:

[Read eLetter] More Research or More Reflection Needed?
Katharina Manassis   (3 April 2006)
[Read eLetter] End-of-life care in Canada: patient priorites and perceptions.
Mark Clemons   (13 March 2006)

More Research or More Reflection Needed? 3 April 2006
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Katharina Manassis
Dept. of Psychiatry, University of Toronto

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Re: More Research or More Reflection Needed?

katharina.manassis{at}sickkids.ca Katharina Manassis

Based on their findings, the authors of this article conclude that the key to quality end-of-life care is having trusting, communicative relationships between attending physicians and seriously ill patients and their family members, and that such care may need to be tailored to individual needs. This conclusion is very consistent with their findings. Unfortunately, the paper offers a disappointing lack of suggestions as to how to better ensure that physician-patient communication and tailoring of care occurs routinely in end-of-life situations. Instead, the authors advocate more research in the field.

It is therefore important to note that educational programs designed to promote communication between health practitioners and dying patients already exist, and are being evaluated (Fischer et al., 2003; McClement et al., 2005; Smith-Cumberland and Feldman, 2006). Physicians without such training, however, may avoid end of life discussions with patients and families. Whether due to time constraints, financial disincentives, concerns about legal implications, the psychological tendency to interpret patient death as physician failure, or feeling inadequately prepared to manage the situation (Alaeddini et al., 2000; Pereira, 2005), doctors are often difficult to find when the end is near. In some situations, families may not even realize they have a choice about whether or not to continue life support measures unless they inform themselves about their loved one’s condition and its prognosis, and insist upon one or more discussion(s) with the responsible physician about end of life issues. Thus, we may inadvertently discriminate against patients with less educated families, or families that are not familiar with the Canadian health care system. Even among the well-informed, it is often only those who are assertive and persistent who become part of the medical decision- making process.

The authors also state that their findings suggest “promoting patient autonomy with tools such as advance directives or living wills” and “increasing home-care capacity for palliative care” may not be optimal. Unfortunately, these statements may mislead the reader into thinking that we do not need living wills or increased home care, when their findings may actually suggest the opposite. While the findings do not directly address the merits of living wills and home care, they suggest that these measures alone are inadequate. We need trained professionals as well. For example, we need a trained professional to sit down with the patient and family and decide when to honor a living will: when to allow another day or another week on life support in case a meaningful recovery is possible, and when it is medically reasonable to stop. We need a trained professional to help patients and families objectively weigh the pros and cons of continuing treatment in an acute care hospital, versus a more chronic facility, versus at home. Near the end of a patient’s life, emotions can run high and discerning what is reasonable and objectively makes sense is often difficult for patients and families to do without professionals’ help.

Despite the study’s main findings, we must also humbly acknowledge that ‘quality end-of-life care’ is not dictated entirely by the physician- patient relationship. Physicians often report a lack of hospital support to implement palliative care appropriately (Alaeddini et al., 2000). Many respondents in the present study, for example, cited ‘continuity of care’ as an important factor. Such continuity is often difficult to achieve in an acute care hospital environment. Patients may move from one unit to another and have frequent changes in nursing staff. Care may also vary from one hospital setting to another. Patients finding themselves on medical or surgical units where death does not occur frequently may not receive the same standard of palliative care as patients on oncology units, where staff are typically better trained in palliative measures. Palliative care may be interpreted as ‘no care’ in some settings, with the unfortunate result that dying patients may spend their final hours unkempt, uncomfortable, and alone.

Tailoring care to the individual’s situation (as the authors suggest) may also be difficult to achieve in hospital, especially when policies are rigidly applied. Dying patients’ family members, for example, often have doors closed in front of them and are simply told “this is our visitor policy”, with no opportunity for discussion. Although there are times when visitors can interfere with patient care, at other times their presence may be experienced as a blessing. The dying patient’s wishes and overall well-being are worth considering in making such decisions.

In view of these problems, what are some practical suggestions consistent with this study’s findings? One might be to ensure training in end of life care at both the undergraduate and graduate levels for all medical personnel. We insist upon certification in Basic Cardiac Life Support. Why not insist upon training in basic end-of-life support? Such training has already been shown to improve attitudes towards the dying among health professionals, and to reduce their tendency to shy away from end-of-life discussions (McClement et al., 2005; Smith-Cumberland and Feldman, 2006). Ensuring adequate compensation for this often time- consuming work may also be important. Further, health care administrators could consider hospital-wide minimum standards for palliative care, and guidelines for tailoring of care in end-of-life situations. Hospital-wide access to multidisciplinary palliative care teams could also be helpful, especially for patients in settings where death is not a common occurrence.

In conclusion, we may not need more research. Rather, we need more education, more practical solutions, and more compassion.

References:

1. Alaeddini J, Julliard K, Shah A, Islam J, Mayor M (2000), Physician attitudes toward palliative care at a community teaching hospital. Hosp J, 15(2): 67-86.

2. Fischer SM, Gozansky WS, Kutner JS, Chomiak A, Kramer A (2003), Palliative care education: an intervention to improve medical resident knowledge and attitudes. J Palliat Med, 6(3): 391-399.

3. Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, Shortt S, Tranmer J, Lazar N, Kutsogiannis J, Lam M (2006), What matters most in end -of-life care: perceptions of seriously ill patients and their family members. CMAJ, 174(5): 627-641.

4. McClement SE, Care D, Dean R, Cheang M (2005), Evaluation of education in palliative care: determining the effects on knowledge and attitudes. J Palliat Care, 21(1): 44-48.

5. Pereira GJ (2005), Palliative care in the hinterlands: a description of existing services and doctors’ attitudes. Aust J Rural Health, 13(6): 343- 347.

6. Smith-Cumberland TL, Feldman RH (2006), EMT’s attitudes toward death before and after a death education program. Prehosp Emerg Care, 10(1): 89- 95.

Conflict of Interest:

None declared
End-of-life care in Canada: patient priorites and perceptions. 13 March 2006
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Mark Clemons
Sunnybrook & Women's College Health Sciences Centre

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Re: End-of-life care in Canada: patient priorites and perceptions.

mark.clemons{at}sw.ca Mark Clemons

Christine Simmons and Mark Clemons

The recent study by Heyland (1) provides excellent insight into the wishes and priorities of seriously ill patients and their family members. It is interesting that the highest priority issue for both patients and their families was trust and confidence in the doctors providing care. The authors note the perception of “what matters most” in end-of-life care varies largely between different patient groups and their family members, and indicates the need for individualized care. In our own Medical Oncology practice we find that this variability in “what matters most” exists not only between patient groups but also at different stages of a patient’s illness. The large discrepancy between place of death of metastatic breast cancer patients is an example of this - our outpatient data shows that 71% wish to die at home while in reality only 33% actually achieve this(2). This probably reflects a complicated combination of the difficulties in the coordination of palliative care services, as well as changing perceptions and decisions in end-of-life care by the patients and their caregivers as the patients condition deteriorates. Therefore decisions and communication about end-of-life care not only need to be individualized, but also need to be reassessed frequently, as choices and perceptions vary not only between groups but also vary with time. Hopefully, through awareness of these key issues we can improve the quality of end-of-life care for all terminally ill patients.

1. Heyland DK et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 174(5); February 28, 2006.

2. Clemons M et al. Dying with Breast Cancer – an audit. 2005 ASCO Annual Meeting Proceedings, 23(16S), pp767s.

Conflict of Interest:

None declared