Volume 1, Issue 09 - November 1998

Decision Making Towards the Final Exit

Case Presentation

John is a 42 year-old single parent who presented to the emergency room with increasing back and leg pain. He was diagnosed with recurrent Leiomyosarcoma with lung and bony metastases. At the time of his admission and throughout his hospital stay, John was conscious and capable of making his own decisions.

At a conference with the oncologist, John and his family, the goals of therapy were discussed. Although he opted to try one course of chemotherapy to deal with the cancer, John did not want his care to include CPR if he arrested. As a consequence of the chemotherapy, John experienced side effects that included bone marrow suppression, severe weight loss, nausea, and vomiting.

A second family conference was scheduled by his oncologist to review the goals of care. John and his family learned that the cancer had spread throughout his body. The oncologist suggested palliative care. To the surprise of the medical team and his family, John's wishes for himself in terms of his therapy had changed. Now, he wanted to wait and see for a while. He begged the oncologist to keep him alive for his son's graduation, five years away. Although John's cancer had spread to his major organs, John was clinging to some degree of hope - perhaps in response to his fear of an impending death and his anxiety around leaving his 13 year-old son orphaned at the height of his growing years. Following an assessment of his decision-making capacity, John's DNR status was changed to include CPR. The Ethics Committee was asked to review the case.

In this article I will consider the above case using the Four Box approach developed by Jonsen, Siegler and Winslade.

Medical Indications

The first question to raise in assessing the medical facts of this case is whether the chemotherapy could abate the spread of the disease and decrease the amount of pain John is suffering. And if John's pain does not improve, what other interventions would be needed to resolve the pain?

The prognosis for Adult Soft Tissue Sarcomas depends on several factors such as the patient's age, size of the tumor, histology grade, and the development stage of the tumor. Tumors that have spread to distant sites are associated with a poorer prognosis. John wanted to wait awhile and was hoping for more treatment, but in view of the extent of the metastases, one would wonder whether additional aggressive therapy was warranted. The prognosis of Retroperitoneal Sarcomas such as in John's case is complicated because of the difficulty in completely resecting these tumors and the limitations placed on high-dose chemotherapy. Knowing the extent of John's malignancy, the oncologist and the Ethics Committee had to entertain the question of whether further treatments would be futile.

Patient Preferences

An individual's personal wishes are held in high regard in North American society under the principle of autonomy. Personal preferences for care reflect a patient's values and his or her understanding of the illness and of the risks and benefits associated with treatment choices. I would argue that an important part of autonomy is the responsibility of the competent patient to thoughtfully assess his or her values and goals and to articulate them to those involved in providing his or her care. The duties that then stem out of respect for autonomy include acting to ensure client self-determination is promoted and refraining from activities that diminish a client's decision-making ability. Autonomy should focus on the caring relationship with attention to cultural or other differences that might alter a client's perception of the limits of autonomy.

John is well-informed about his illness and capable of making decisions for himself. While he initially opted not to have CPR, a week after chemotherapy John surprised the medical team when he requested that his DNR status be reversed. In John's case, his decision to change his mind in terms of the goals of therapy reflected his own decisions around the course of his illness. By the principle of autonomy, John's wishes should be accorded much weight in the decision-making process.

Quality of Life

Recent studies suggest that persistent pain may undermine a patient's quality of life but have also noted that pain relief measures may improve it. One may ask how John's quality of life would be affected if he were to continue to accept aggressive therapy compared to his quality of life were he to choose the palliative approach.

Other factors that complicate the question of John's quality of life include the emotional suffering that comes with the anticipation of leaving his son and family and the loss of control over the progress of his illness.

Contextual Features

There are a number of contextual features to consider in John's case. At the personal level of analysis are John's family's beliefs and perceptions. John's family was ambivalent towards his decision to reverse his DNR request.

The role and values of the healthcare professionals and, in particular, the physicians, are also contextual factors that deserve attention. Although the provider's role involves educating patients about possible future health status and rights regarding medical care, the provider will also have values that need to be respected.

Canadian society assumes that access to a just and appropriate level of care is a matter of right; however, like any other right, this one also has its limits. Issues of fairness and distributive justice arise from the argument that we sometimes have to choose between giving scarce resources to people who would benefit the greatest, as opposed to allocating them to people who will only benefit marginally. In John's case one would have to ask if any other patient would unfairly have their care limited as a consequence of providing John's care.

Case Recommendations

Upon consideration of these and other issues, the Ethics Committee recommended providing John and his family with all the relevant written information, as well as time to absorb the information given and to engage in self-reflection, so he could make an informed decision. It was believed that there were no competing factors that were compelling enough not to respect John's decision about resuscitation.

With regard to further chemotherapy, it was recommended that the possible outcomes of this treatment be explained in a detailed manner to John, taking special efforts to facilitate understanding (for example by using case scenarios in simple language) to ensure that whatever care was agreed upon, the anticipated outcomes would support the goals of care, as developed together by John and his healthcare providers.

Notice of PHEN General Meeting

There will be a general meeting of the members of PHEN in Edmonton on Friday November 27, 1998. The meeting will be held at the Edmonton General Hospital (Room 3R04), 11111 Jasper Avenue from 9:40 to 9:50 am (during a break scheduled into the personal directives session described below). The purpose of the meeting is to vote on a motion to change the objectives of PHEN under the Societies Act to make the Network eligible for charitable status under the Income Tax Act.

Personal Directives: A Retrospective On Year One

The Personal Directives Act was proclaimed in Alberta on December 1, 1997. As part of an on-going effort to stimulate dialogue, the Provincial Health Ethics Network & The Office of the Public Guardian, with the support of The Calgary, Capital, David Thompson, Lakeland, Mistahia & Palliser Health Regions, are holding a series of informal discussion groups throughout the province. These sessions will provide an opportunity to engage in facilitated discussion, share resources and suggest strategies to address on-going concerns and ethical issues related to the provision of personal services for those who lack mental capacity. All service providers, administrators, organizational representatives and members of the public are invited to attend.

Announcements

• Several members of the PHEN Executive Commitee met with Deputy Health Minister Donald Ford, Assistant Deputy Minister Cecilie Lord and Alberta Health Senior Strategy Leader Neil McDonald in October. The purpose of the meeting was to update the Ministry on the recent activities & accomplishments of PHEN and to maintain open communication between the two organizations. The meeting was a positive one in tone, with Alberta Health representatives reaffirming the importance of the Network and its function. PHEN iterated its goal of expanding its funding base in the years ahead to include private and philanthropic sources, thus decreasing Alberta Health's contribution, in percentage terms, to the total PHEN budget. The Deputy Minister expressed support for PHEN's involvement in public education and in efforts to engage Alberta communities in dialogue around values in health and health care. He suggested that PHEN court the interest of the Alberta Government's Standing Policy Committee on Health Planning. The Network was assured that, barring any unforeseen calamities, its direct government funding would remain stable in the near future.

• PHEN is pleased to announce that a number of students have joined our Edmonton office as volunteers. Natasha Broemling, James Felix, Helen Hong, Jennifer Swainson and Vivian Vernon will be engaged with supporting the PHEN staff in activities ranging from literature searches to performing administrative duties. We welcome these volunteers to PHEN and invite any other individuals interested in working with PHEN to contact either office for more information.  

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.