Dying to Speak: An Innovative Toolkit May Help Terminally Ill Patients to Live Better and Die at Home With Better Quality of Death

| 27 September 2013

To sleep, perchance to dream—ay, there's the rub: For in that sleep of death what dreams may come,  When we have shuffled off this mortal coil. Hamlet Act 3, scene 1 (W. Shakespeare) Nothing is certain except death and taxes - or so concluded Benjamin Franklin in 1789. I will leave tax policy to the CRA, however, death, and particularly dying well, is something worth considering. Our longevity, due to advances in public health and medicine, suggests that we would be well served to plan how we will deal with terminal illnesses and decide where we would prefer to die. Failure to consider how we die has adverse consequences for patients, their families and society. This past week saw the death of a prominent Canadian physician, Dr. Donald Low. His posthumous appeal for assisted suicide is one of the many ways (albeit an extreme way) in which an aging society might deal with the great inevitability of mortality. Before we hear Dr. Low’s views re: controlling the timing and of death, a more relevant and less controversial pair of questions should be addressed: Where do you want to spend your final days should you become terminally ill and ultimately, where would you like to die? Most Canadians are dying in hospital; however, when asked, the majority of people with a terminal illness prefer to be cared for at home and want to die at home. There are many people who have pondered their mortality and planned accordingly, with advanced directives, wills, power of attorney contingencies and explicit guidance for family and physicians about where they wish to die. However, for many people dying is like a roller coaster ride. One minute everything is fine, then a sense of impending doom is followed in a heartbeat by a series of gut wrenching spirals and then….it’s over. The traditional approach to death has been to leave it to fate (or one’s religious faith). However, fate is often unkind and espousing a religion or having faith presumably does not preclude planning. A little planning may allow us to receive care for a terminal illness and ultimately die in an environment of our choosing (and for most people that is at home). Preparation is not only wise and economical but gives the patient control. Control, even if illusory, is appealing to a society that increasingly scripts its life on Facebook and dances to its own custom iTunes playlists. Perhaps we have a touch of Dorian Gray syndrome. Dorian Gray is Oscar Wilde’s character who pursued beauty and hedonism while retaining his youthful beauty (while his portrait aged in the attic). Spoiler alert..it doesn’t end well for Mr. Gray. Legend: Hurd Hatfield contemplating his increasingly ravaged picture in the 1945 movie, The Picture of Dorian Gray.

This love of youth and beauty and desire to remain active to the very end is understandable but we are an evanescent species. With a little planning, a lot of communication and some reengineering of our health care system we can die as well as we have lived.

fig 3

To frame the discussion let me state that hospital is not a good place to die from a chronic, terminal illness. Note, I am not referring to hospital deaths that occur while a cure is being attempted. Rather, I am referring to patients with incurable illnesses, such as an advanced malignancy or one of the common chronic diseases which has become refractory to treatment, such as heart failure, COPD or perhaps simply advanced age with its bevy of comorbidities. For such people, the hospital is not a good fit. Even the nicest acute care hospitals offer limited privacy, are noisy, put one at risk of risk of sedation, infection, and delirium. Conversely, people seeking palliation are not “good patients” for the acute care hospital. Their general debility and need for social rather than medical services congest acute care facilities. Hospitals struggle to feed and mobilize patients with terminal illnesses. Acute care hospitals don’t have what they need and what the patients suffer from we often deal with poorly. True, there are hospices and palliative care hospitals; however, there is no place like home - provided support is available - in terms of quality of death and economic value. It is a modern tragedy: expensive care in acute care hospitals does not help the patient live well, or die well. These increasingly numerous patients are inadvertently choking the acute, inpatient portion of the health care system, which was designed to provide brief episodes of intensive health care for curable illnesses. Our expectations for quality of life as we age are increasing, often unrealistically so. This failure to understand our mortality is not just a Western affliction. Consider the case of an Indian woman, Rajo Devi who gave birth at age 70 through in vitro fertilization. Western societies are aging and this gray tsunami suggests we need to rethink how patients spend their final months of life. In 1956, the median age of Canadians was 27.2 years. In 2006 it rose to 39.5 years. Statistics Canada projects it will reach 46.9 years by 2056. Likewise, in 1956 only 7.7% of Canadians were over the age of 65, while in 2006 13.7% were 65 or older. By 2056 >25% of us will be seniors. A glance at this graph of life expectancy in Canada tells us one thing…we cannot afford a health care system that allows most people to die in hospital.

Quality of Death: It is past time to reframe the discussion. We often talk about quality of life; lets’ begin to discuss quality of death. That’s what inspired Dr. Low (featured at the end of this blog) to speak up. It may seem odd when one is healthy to consider whether the process of our death will “meet our expectations”; but this is in fact a valid question. Quality of death is already being measured. The Economist’s Intelligence Unit ranks Canada as ninth in an international ‘Quality of Death’ index (see chart at left). This index measures current hospice and palliative care environments across 40 countries in terms of the quality and availability of end-of-life care. While Canada did well in the competition we were only able to provide needed hospice palliative care services to 30% of those dying. If we can overcome taboos, change health policy, educate and inform patients on how to spend the final weeks of their illness at home and ultimately die at home this will be both satisfying for patients and save our health care system from end of life expenses which offer little benefit. So what might a solution look like? This is a topic that is increasingly of importance and is beginning to de discussed. So for a potential solution I turned to an expert, Dr. Ray Viola (right), a faculty member at Queen’s University and member of our Palliative Care Division. Dr. Viola and his colleagues in the Department of Public Health Sciences at Queen’s University (Drs. Patti Groome, Helene Ouellette-Kuntz and Paul Peng) and Donna Logan, Manager, Client Services for the South East Community Care Access Centre, received an Innovation Grant from SEAMO, our alternative funding plan. The goal of their research is to test a strategy that helps patients to remain at home during a terminal illness and ultimately die at home.

Viola

Dr. Viola notes, “Most dying Canadians prefer to remain at home and die at home, but over half of deaths occur in hospital. Health care costs increase as deathapproaches, largely due to inpatient hospital care. As many as 40% of Ontario cancer patients at the end-of-life visit an emergency department during the last 2 weeks of life, often because of symptoms that could be managed at home. By planning ahead for home deaths and anticipating changes in patients’ conditions, unnecessary visits to emergency rooms and admissions to hospitals could be prevented.” Dr. Viola and colleagues adapted an intervention that has been used as a means to help patients die at home. Their team has created a toolkit for the home care nurse and family to use to deal with issues that might otherwise force the patient to come to the Emergency Department. The kit is equipped with medications that allow the home practitioner to treat pain and other symptoms that might otherwise lead to a trip to hospital. This project evaluates two initiatives introduced in the homes of terminally ill patients in southeastern Ontario: the Yellow Folder, containing planning information for the community nurse to use with the family, and a Symptom Response Kit, containing medications and supplies for use if the patient’s condition suddenly changes. Will this work? The innovation of Dr. Viola’s team is that they will formally evaluate the efficacy of this kit as a means of keeping patient at home. They will compare the result (admissions vs patients dying at home) in people provided with the kit versus matched historical controls. Dr. Viola and his collaborators are in the midst of the study and results are expected upon completion of the trial in 2014. Let’s come back to Dr. Low. He took the trouble at the most difficult time in life to deliver his opinion regarding the rights of an individual to control one’s death. For many reasons, including his service to the country during the SARS outbreak in 2003 and his distinguished medical career as microbiologist in chief at Toronto's Mount Sinai Hospital, his voice should be heard. I imagine many saw the CBC broadcast of his posthumous petition, but in case you missed it, click on the link below. Dr. Low died eight days later, at home, in the arms of his wife. However, neither of them considered it the dignified death he had hoped for.

Dr. Low said, “I know I’m going to die, what worries me is how I’m going to die. They give you a very simple way out. You drink a cocktail and you fall asleep and you do this in the presence of your family. In countries where it’s legal, it’s quite easy to do. In countries where it’s not legal, it’s pretty well impossible.” I should reinforce that doctor-assisted suicide is illegal in Canada.

I will not weigh in on Dr. Low’s suggestion re: assisted suicide. Assisted suicide is controversial, morally troubling and might not even be an issue, if a proper system of palliative home care existed. In any case, assisted suicide should not be conflated with the movement to allow people to die at home. People should have choice as to the location where their care will be received in the event of an incurable illness and choice regarding the location from which they will depart this mortal coil. For many, the place of choice is home. However, Dr. Viola and Dr. Deb Dudgeon, Head of Palliative care at Queen’s University, reminded me that it is not so much about where we die as where and how well we live during the illness. “The time of death is a very short period of time, while the time one is living with a life-threatening illness can span a great deal of time. How and where a person lives during that time likely carries much more significance than the final moments of life. Having said that, however, some patients and families do put a lot of emphasis on where death occurs, in the time leading up to the death as well as during bereavement. Often the goal is to remain at home, although occasionally it is to avoid a home death at all costs.”-Drs. Dudgeon and Viola Whether it is Dr. Viola’s toolkit or some other program, supporting people in their efforts to live well and die at home, if they so chose, makes sense and will likely be required to save our struggling acute care hospitals. Postscript: For those interested on the topic of death and dying in Canada, consider the following book: by Northcott and Wilson (2^nd edition).