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

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.

fig12

 

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.

fig 4Quality 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.fig 5

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 (2nd edition).

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

  1. Dr. Jocelyn Garland says:

    Dear Collaegues,
    I watched the CBC segment the other night and Dr Low’s plea and was very moved. I was shocked as I certainly remember Dr. Low’s constant presence during the SARS epidemic and was saddened that he died. I think that his words remind us as medical doctors regarding our oath of “doing no harm”, and how complicated these three words can be sometimes in practice. I will not forget what Dr. Low said. In nephrology we are dealing with discussions regarding death in the context of choosing whether to accept dialysis therapy, or in some cases, deciding to withdraw dialysis therapy. These discussions are never easy, but can be very rewarding for the medical team, and I believe for patients and their families, when handled well with support from our nursing colleagues, social workers and the whole medical team. Thank you for this topic.

    • Stephen Archer says:

      Thanks for your comments Jocelyn. Your patients with renal failure are very interesting in regards to the choices they must make. Each of them must choose between a therapy that averts death BUT require hours of invasive therapy 3 times a week in hospital . I am curious how often people do not choose to accept dialysis or having had dialysis choose to stop?

  2. Elaine Petrof says:

    Thank you for bringing this controversial topic up for discussion. I met Don Low over 20 years ago when I was a med student at U of T. I view him as one of my most influential first mentors who left a lasting impression: like Don, I am now an Infectious Disease physician and scientist, pursuing research on pathogens today. His keen mind, his sometimes quirky out-of-the-box ideas, and his incredible vitality, energy, and enthusiasm for research were an inspiration to everyone around him. Being the continually upbeat and optimistic person that he was, I cannot imagine that Don would have even considered physician-assisted suicide unless things had gotten pretty dire. I think the work that Dr.Viola and colleagues are doing is a step in the right direction, not only to help keep patients comfortable but to help them maintain a sense of control over their lives, when their bodies become overwhelmed by the ravages of their illness.

    • Stephen Archer says:

      Thanks Elaine. I didn’t know Dr. Low personally but had similar impressions…it must have been bad for this dynamo to feel the need speed a process that was clearly moving quickly toward death without any accelerant. Of course there are many deaths that are much longer, slower and which are not so easily palliated. I like your phrase “bodies are overwhelmed by the ravages of their illness”. It raised the question in my mind, whether it is the body or the spirit being broken that leads people to consider accelerating their own death. However, like you I prefer the route chosen by Dr. Viola and the palliative care team that focuses on control of symptoms, provision of comfort and assisting patients in staying at home.

  3. Mino Mitri says:

    Thank you Dr. Archer for raising this issue concerning “quality of death”. It seems that people, even physicians, are reluctant to talk about death, maybe because it is a “taboo” topic. However, we need to talk more about it and patients need to make plans, but patients will not plan unless they are made aware of the natural progression of their chronic diseases. I think a big issue is the delay of patient referrals to palliative care. Often times, it’s “too late”, and I would argue that it is often the case with non-malignant diseases. Is there a lack of education on the appropriate timing for referrals to palliative care? Maybe earlier referrals will translate into better planning? Here is a great short TED talk on “Prepare for a good end of life” by Judy MacDonald Johnston.
    http://www.ted.com/talks/judy_macdonald_johnston_prepare_for_a_good_end_of_life.html

  4. MIno: Tnanks for the comment and the TED talk link. I recommend it to readers of the blog..it is very practical and well worth a listen. The n=2 account of how to plan a good death is instructive (and reassuring). I also agree with you: most patients wait until it is too late to make a plan for a good death and we as physicians often wait too late to consult palliative care. In the case of the MD this leaves us in our default interventional mode long after we should have switched to a palliation quality of life mode of care. It is critical to having a good death that we make clear, written plan while you have your faculties. As the TED talk illustrates we also need someone to help ensure that directive is followed.

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Dr. Archer, Dept. Head
Dr. Archer, Dept. Head