Volume 4, Issue 01 - March 2001

Sedation at the End of Life: A Challenging Choice

Guest Writer Profile:
Penny Parker

P Parker

This month we are very pleased to have as our Guest Writer, Penny Parker, BScN.

Penny has been a Registered Nurse for the last 23 years.

She received her Baccalaureate degree in nursing from the University of Calgary. She spent 11 years as a nurse in the hospital setting, most of that time spent in Gynecology/General Surgery and ICU/CCU. She received her HIV Nurse Clinician designation from the University of Southern California Medical Center - Los Angeles and was seconded to the "Caring Together" National Demonstration Project on the Care of Persons living with HIV/AIDS from 1994-95. Penny joined the Palliative Home Care program in Edmonton 11 years ago as a front line case coordinator.

For the last two years, Penny has served as Manager, Palliative Care Services, Capital Health Home Care program. She is the mother of two sons in their twenties, one of whom will be married this summer.

The value of life lies not in the length of days but in the use you make of them.
-- Montaigne, Essais, Bk1, Ch20.

The goal of expert Palliative care is to provide effective pain and symptom relief to individuals who are living with a terminal diagnosis and short-term prognosis. The intent is neither to shorten life nor prolong it, but to work with the dying individual and their family to assist them in attaining the highest quality of life possible during their last days.

Most terminally ill individuals can be kept comfortable with medications for pain and other distressing symptoms and remain mentally alert. However, there are situations where pain syndromes, intractable delirium or shortness of breath do not readily yield to medical treatment. It is in these situations that the option to provide palliative sedation can - and should - be considered, to reduce or eliminate the patient's awareness of distressing symptoms.

Palliative Sedation

The Alberta Palliative Care Resource1 defines palliative sedation as, "the intention to induce sleep in a patient with one or more refractory symptoms who is perceived to be close to death." The challenge of intractable symptoms in the dying that require sedative management has been addressed frequently in palliative literature of late. The medical and ethical issues surrounding this topic are complex and have become an increasingly controversial discussion point in palliative medicine.2 For example, in 1996, Billings and Block3 went so far as to describe the practice of palliative sedation as "slow euthanasia"; an allegation that elicited a vehement response from the palliative care community.

The decision to utilize sedation at end of life is not an easy one to arrive at. It is essential that all other possibilities for the management of the intractable symptoms be exhausted through the use of expert assessment, before this measure is implemented. This much is uncontroversial. But the question remains, when the point has been reached where clinical interventions have failed, and suffering persists, how then do physicians and nurses proceed? What are the ethical principles that should be considered, and how can they guide our practice in these situations? The context of a case study may help when exploring these questions.

Case Study

A 46 year-old man living with advanced, end-stage Amyotrophic Lateral Sclerosis (ALS) was referred to the Palliative Home Care team for support to remain at home and die there. He had been married for 14 years, he and his spouse were both successful in business, and they had no children.   The couple lived in a west-end condominium. He was confined to either a specially adapted electric wheelchair or his bed, and his disease had progressed to the point where he had no movement of his extremities. He was only able to speak in a whisper.  A foley catheter was in place, and a strict bowel routine had been in place for several months. Although still able to speak, his respiratory effort was weak, with noticeable accessory muscle involvement. Air entry into the lung bases was significantly reduced.

The palliative home care team initially worked with the client, his family and physician, to ensure that medical management of symptoms was optimized. Low dose, intermittent, sub-cutaneous Morphine was initiated to ease both physical pain, and an increasing sensation of shortness of breath. A "Do Not Resuscitate" order was discussed at length and agreed to by all. Occupational and physical therapy interventions were implemented to provide soft-supports and teach the family chest physiotherapy techniques. The family was supportive and readily engaged in the treatments.

Several weeks after being admitted to the Home Care program, the client began to discuss his concerns regarding the expected nature of his death. He consulted with both his family practice physician and a respirologist to confirm that, without artificial ventilatory support, increasing shortness of breath and difficulty breathing (dyspnea) would be the inevitable outcome of advancing disease. He expressed a total unwillingness to consider respiratory support, stating instead that he was ready to die, and that his only request was to die unaware of the struggle to breathe. A family conference was held with a Palliative Care consultant physician, to discuss the implications of this decision.

The client repeatedly expressed his wish to be sedated when his dyspnea increased, and that he should be the one to determine when to initiate the sedation. He clearly articulated his belief that there was no value in continuing to live in this condition when death was inevitable. He could see no value in artificial ventilation as a means of increasing the quantity of his days, without positively impacting the quality, as he defined it. He agreed to a psychological assessment, which determined that he was not clinically depressed and had the capacity to make decisions regarding his care.

After a weekend spent with family and friends, sharing love and goodbyes, a sub-cutaneous Midazolam infusion was started. The medication was titrated to a dose sufficient to produce sleep and monitored around the clock by registered nurses. The Morphine infusion was maintained for pain control, and 72 hours after the induction of sedation, the client died, at home with his family, as he had wished.

Autonomy and Quality of Life

In this case, the client's sense of autonomy in decision-making, as well as his personal definitions of quality and value of life, loomed large.

The client in this case was assessed as being competent to participate in his own health care decisions. According to the principle of respect for autonomy, the decision-making for an individual ought to be guided by that individual's thoughtfully considered values and beliefs. In the above case study, this moral principle was given weight - the client's autonomy was respected. Accordingly, the client dismissed the suggestion of artificial ventilation, seeing it as a futile intervention intended to extend quantity of days, not improve quality of life as he defined it.

For this man, a life of quality meant a life that involved meaningful endeavor, a life worthy of the respect of others, a life of interaction with family and friends. He spoke of the importance of acknowledging that death was the inevitable outcome of his disease, with or without sedation.

Randall & Downie4 suggest that, "it might be argued that a necessary condition of life's having meaning, or that what makes the very idea of quality possible, is that death comes to us all in the end; death supplies the framework or the parameters within which we can talk of meaning and quality". This man could find no value in his continued existence, had achieved all that his disease had allowed him to in life, and had come to a point of closure, as he defined it.

Double Effect

For clinicians, although alleviating the client's suffering is the goal of palliative intervention, the principle of double effect becomes a significant consideration:

This complex and controversial doctrine draws a distinction between intended and foreseen consequences, as is normal practice in health care where the benefits of treatments are intended, whereas the burdens and risks are foreseen but not intended. Heavy sedation in palliative care is seen to have a "double effect": one effect is that which is intended for the relief of suffering, and the other is one which is foreseen but not intended, and this is the potential to shorten life. Thus, the doctrine permits the relief of suffering by the only means possible, despite the fact that it is known that life may be shortened as a consequence of that treatment."4

More simply stated, medications are administered which induce a state of diminished awareness or loss of consciousness that eventually leads to death.

Indicator of Impending Death?

The decision to initiate palliative sedation is one that is not taken lightly by the Palliative Care community in Alberta, and the Alberta Palliative Care Resource1 strongly advises consultation by a palliative consultant prior to consideration of this intervention.

In his report of December 1997, Fainsinger5 reported that of the 87 patients seen by the palliative consult team at the Royal Alexandra Hospital over the span of one year who died in hospital, only one percent required palliative sedation. The literature reports varying rates of use of palliative sedation in palliative care units, some reporting a rate as high as 48%. A common theme in all reports is the short time period observed from initiation of sedation to death.5 This leads Fainsinger to ask, "Can we really feel comfortable that the need to use sedation is always an indicator of impending death, that it is not sometimes a cause of premature death, and that reversible causes for the intractable symptom complex have all been excluded?"5 At this point in time, the answers elude us.

In palliative care, when complex, unmanageable symptoms arise, it is imperative that expert and meticulous assessment for reversible causes is completed. If no other humane, ethical treatment can be found, open discussion of palliative sedation may be warranted. Although by no means exhaustive, the list of topics for inclusion in the discussion can include autonomy, value and quality of life, and double effect.


References:

1. Pereira J, Bruera E, Alberta Palliative Care Resource. Division of Palliative Care Medicine, University of Alberta. © July 1999.

2. Cherny NI, Portenoy RK. Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. J Palliat Care 1994: 10(1): 31-38.

3. Billings JA, Block SD. Slow euthanasia. J Palliat Care 1996; 12 (4): 21-30.

4. Randall F, Downie RS. Palliative Care Ethics: A Companion for all Specialties. Second Edition. Oxford University Press. © 1999.

5. Fainsinger RL. Use of Sedation by a Hospital Palliative Care Support Team. J Palliat Care 1998; 14 (1): 51-54.

6. Stone P, Phillips C, Spruit O, Waight C. A comparison of the use of sedatives in a hospital support team and in hospice. Palliative Med 1997; 11: 140-144.


Announcements

  • PHEN's website has a new design and expanded resource sections. Visit www.phen.ab.ca.
  • A reminder that PHEN's annual conference and general meeting will take place this year on May 25, 2001, in Red Deer. The conference will explore the meaning of equality within the context of health care. The early bird registration fee ($100) is available to those who register before April 9. For more information, visit the PHEN web site.
  • Oops! Multiple copies of the conference brochure have been inadvertently sent to PHEN members - apologies for this mix up!
  • The PHEN offices will be hosting the third annual meeting of RHA and provincial board representatives to discuss regional and local ethics committees and resources in Alberta. The meeting will take place on the evening of May 24, 2001, in Red Deer. For more information, please contact a PHEN regional office.
  • A number of health institutions in Alberta have recently contacted the PHEN offices in regards to ethical issues surrounding the use of complementary and alternative therapies in continuing and acute care. If your region or organization is in the process of, or has already developed policy in this area, and is willing to share its learnings with others, kindly contact a PHEN office.
  • The 13th annual conference of the Canadian Bioethics Society will be held October 11-14, 2001 in Winnipeg. More information is available at www.hsc.mb.ca/cbs2001. For those interested in presenting, the deadline for receipt of abstracts is April 15, 2001.
  • The 4th annual meeting of the American Society of Bioethics and Humanities will be held in Nashville, TN, October 25-28, 2001. For more information, visit www.asbh.org.
  • The PHEN staff is conducting an evaluation of Bioethics Week 2001. The staff would be pleased to receive comments and suggestions regarding the event. Please direct your comments to Colette Mooney at info@phen.ab.ca. An evaluation form is also available at the PHEN website.
  • Representatives of the PHEN board and staff attended the Alberta Health Authorities annual conference, held in Edmonton March 15-17, 2001. The conference provides an educational and networking opportunity for board members and senior management teams of RHAs and invited health institutions in Alberta. For more information, please contact Al-Noor Nenshi Nathoo, Bashir Jiwani, or Mary Lou Cranston through the PHEN offices.
  • PHEN is pleased to report that Mary Lou Cranston has agreed to assume the position of Interim Board Chair until the Annual General Meeting of PHEN on May 25, 2001.

 

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