I am going to talk to you about a topic close to my heart: on how we talk and listen to our patients.
From my perspective as a physician for more than 40 years, I have witnessed the non-stop increase in the power of medicine, be they surgical procedures, drugs, chemotherapy or the application of mechanical devices. New technology has enhanced the ability of medical professionals to prolong life, to cure, to never give up. The pressure on doctors remains all in one direction, toward doing more, because we fear doing too little. That is how we are trained. Many physicians have little appreciation that equally terrible mistakes are possible in the other direction: that doing too much could be no less devastating to a person’s life.
It has been said that Medicine in Canada is focused on the disease, not the patient. Procedures have been applied to patients without taking into consideration the functional, emotional, psychological and social needs of the patient; without considering the needs of patients who are medically complex, beset with a number of co-morbidities and may well be frail. Some may be approaching the end of life. For others with a diagnosis such as dementia, congestive heart failure and chronic obstructive lung disease, death may still be a number of years away. For such patients, there is a great necessity for initiating “difficult conversations” prior to initiating medical interventions.
What is frailty?
Frailty is a state of health that makes people vulnerable to illness and injury because they lack the strength to withstand physical and emotional stress. They possess a diminished ability to fight back to health. They may feel less stable on their feet and begin to move more slowly. They may find that shopping and housework are getting more difficult. As their ability to think and remember decreases, they may find it harder to keep track of the details of their daily lives.
During hospitalization or following medical procedures, frail patients may suffer complications such as delirium and functional decline. Delirium is a state of confusion that, once triggered, may not fully resolve. Functional decline is the loss of the ability to perform tasks that the person could previously perform. The outcome may be dependency on others. It may mean being admitted to a long-term care institution. These are very significant potential complications to an older individual. They may be scarier than death. Aggressive treatments have too often led to such outcomes.
Even as the power of medicine has made so much more possible, discussion between health care professionals on the one hand, and frail, complex patients and their families/advocates on the other, is too often inadequate tomake informed decisions about treatment plans.
In an audit of communication practices in 12 hospitals in Canada published in 2015 in the British Medical Journal, theauthors interviewed patients and family members shortly after hospital admission to determine their perspectives about whether healthcare professionals engaged them in key processes of communication. The authors found that there was very little effective communication between the patient/family and members of the healthcare team about goals of care.
A 2009 U.S. study published in Critical Care Medicine, of outcomes after greater than 21 days of mechanical ventilation, only 26% of families reported that physicians discussed what to expect regarding the patient’s future survival, general health and caregiving needs.
Two thirds of terminal cancer patients in the 2008 Coping with Cancer Study reported having had no discussion with their doctor about goals for end of life care.
A 2014 Alberta study looked at how frail patients did after a stay in the Intensive Care Unit. Even though most people survived their operations and ICU stay, only 15% of all the frail patients who lived independently prior to illness were still living independently in follow up.
Physicians are very thorough in discussing the probabilities of complications: for example, there may be a 3% chance of death after open-heart surgery. There may be a 2% chance of a stroke. On the other hand, we do not talk about the chances of loosing the ability to live independently after leaving hospital.
A 2012 study published in the New England Journal of Medicine asked nearly 1200 patients with metastatic lung cancer or colorectal cancer whether they expected their treatment to cure them. The authors found that the majority of the patients felt that their treatment course was likely to “cure” them, even though these conditions had a poor prognosis regardless of therapy. Were the patients who were surveyed not told that their disease was incurable? Were they not told effectively? Did they choose not to believe the message? Direct-observational studies have shown that only about a third of doctors actually state the prognosis — at any time. Half of all patients with lung cancer have not heard any of their doctors use the word “hospice.” We can only conclude that the quality of communication between the health care providers and their patients left a lot to be desired.
A 2009 study sought to monetize the differences in health care use in the final week of life for patients with advanced cancer who reported having end of life discussions with their physicians compared with those who did not. The study also examined the association between expenditures and patients’ quality of life. Interestingly, the two groups did not differ in survival time but patients who reported end of life discussions had less physical distress in the last week of life than those who did not and the costs of care were 35.7% lower.
How did we get to this sorry state of affairs?
The current approach to treatment is the challenge. Too often, care is focused on attempting to cure the presenting problem, to the exclusion of the patient’s other needs. While this may be appropriate for active, robust otherwise healthy individuals with an acute illness, this approach for complex patients often ends badly.
We all have examples of when the system failed the patient, when his or her interest and input were neither the drivers, nor the co-pilots for their own care. Illustrative is “Joan’s” story. The name has been changed but the facts are authentic.
Just forty-something, Joan had already fended off death twice in her life. She was only a teenager the first time she faced mortality and its accompanying existential questions. In her thirties when the dreaded cancer came back, she beat it again. But last year, when her doctor delivered the latest diagnosis, the evidence was overwhelming that this time she could not win the battle. She was terminal. Yet in the eyes of her well-intentioned health care professionals, who had been trained “to prolong life, to attempt to cure, to never give up,” she was young, Their treatment plan was clear.
At this point in her life Joan lived alone, with little family support. Further, the earlier chemotherapy had induced cognitive dysfunction. Even as confused as she was about what was happening, very early on she divulged to friends that if she were destined to die anyway, she didn’t want to go through chemotherapy or other aggressive interventions again. She wanted a peaceful ending at the Vale Hospice.
Nevertheless, somehow, chemotherapy was initiated. Joan continued to feel she wasn’t being heard. Even when she expressed concern to her health care professionals about increasing pain and her struggles with the three flights of stairs to her apartment, she was told, “You can still do stairs.” It was only after much insistence that she was put on the Hospice waiting list. For Joan, it proved too late to get access.
Her friends closed ranks and cared for her at home. They witnessed the frustrating lack of continuity in personal support workers. Although she early on expressed the wish that she did not want to die in hospital, she spent her last two weeks of life on a hospital ward where the routine noise and bustle kept her agitated to the point of frequent panic attacks.
Hospital staff were initially not aware that Joan was palliative. Attention to her spiritual and emotional needs was left to friends who felt ill-equipped to give her what she needed. Over 800 patients died at Health Science North last year.
We can do better.
Recent academic evidence points the way to a coordinated, systematic model of advance care planning that anticipated the lessons from Joan’s story. This model, published in the British Medical Journal in 2010, used trained facilitators to identify the patient’s wishes about end-of-life care. Conversations focused on values, not specific treatments. The research demonstrated that such an approach improves care from the perspective of the patient and the family, and diminishes the likelihood of stress, anxiety, and depression in surviving relatives. This approach decreased unwanted investigations, interventions and treatments, decreased hospitalizations and admissions to critical care, and decreased overall costs.
We have to remember that conducting difficult conversations is a procedure that requires no less skill than performing an operation. It takes time. It requires as much listening as talking.
The development of advance care plans and goals of care should become a key component of the care of all individuals in our community who are medically complex and frail. These plans should be updated as required. The plans should be readily available to all health care providers in the patient’s circle of care. Once widely available, such a plan would be a powerful tool for the integration of care, focusing as it would, on a planned, consistent patient experience across the health care system.
The implications of this proposal are profound. The proposed change in approach would offer patients sufficient information, support and opportunity to make truly informed choices. Furthermore, such an approach would generate substantial financial savings that could be re-directed to front-line care. Currently, Ministry data suggest that up to 25% of health care funding may be spent in the last year of life. This is in the order of $10 billion dollars in Ontario. How much was spent on care that could have been avoided if the patient had received the opportunity to make a truly informed choice?
What are the approaches that physicians take with their patients? Historically, we were paternalistic. We aimed to ensure that patients received what we believed was best for them. It is the doctor-knows-best model. The second type of relationship is termed informative. We tell you the facts and figures. The rest is up to you. Here is what the red pill does and here is what the blue pill does. Which one do you want? In truth neither type is quite what people desire. We do want information and control, but we also want guidance. This type of relationship is called interpretive. Here the doctor’s role is to help patients determine what they want. The interpretive doctor asks, “What are your worries? What is most important to you?” Physicians should be neither commander, nor technician. Rather a caring counselor acting on the patient’s behalf.
Before recommending a course of treatment to fragile individuals, it is all about asking, within an empathetic, supportive environment, a series of questions.
What are your fears about what is to come? What do you value? What brings quality to your life? What trade-offs are you willing to make for the possibility of added time? What is your understanding of your illness? What do you expect to happen? This is quite important because the majority of patients underestimate the severity of their illness and infirmity.
Who is to do the talking? Leading such conversations requires advanced communication skills. The average physician does not have the time, the training or the comfort level. Thus the requirement for trained facilitators. It is important that the patient be given the opportunity for support from family and friends in these conversations that should initially focus on the patient’s values, not on specific treatments.
The potential barriers to advance care planning include the lack of available trained staff. They may not be allowed sufficient time by their institution. Transportation constraints may impede the patient's ability to attend and fully participate in treatment planning.
To achieve success, it is essential that physicians support advance care planning and use the information gathered by the team in developing the treatment plan.
Successful Examples.
Geriatricians in Halifax, Nova Scotia, developed a successful model of advance care planning: The Palliative and Therapeutic Harmonization Program. A similar model was developed in Melbourne, Australia, called Respecting Choices. Both organizations published their positive outcomes.
The province of Ontario has its own instructive story using trained facilitators. Ontario’s rate of success in obtaining consent for organ retrieval had been historically low at 10%. Intensive care physicians used to be responsible for seeking consent. The province’s Trillium Gift of Life Network subsequently elected to train coordinators to take over the dialogue with families about organ donation. The success rate rose to 70%. The coordinators had the training, the skill, the empathy and the time to successfully perform a very important job.
Now I come to the pilot project at Health Sciences North that began in January of 2016.
The ward clerk identifies all patients 85 years old and greater. This is on 8North, a ward that looks after a mix of Cardiology and Medical patients. All nurses are now expected to participate. The meeting should include the substitute decision maker. If the patient is uncertain about his/her medical condition, the attending physician is consulted. There may be consultation of the social worker for information. The meeting with the patient should occur early in the admission. The information gathered should be documented.. A copy is given to the patient/SDM. A process is being developed to store this information electronically.
Here are the questions that we are asking and documenting the answers in the patient’s chart:
- Based on previous discussions with health care providers, what is your understanding of your illness? Do you expect to get better, to be cured? Or is your illness expected to get worse over time? Are you worried about developing difficulty with remembering, swallowing, walking or other things that are important to you?
- Do you think that you need to know more about your condition? Is there any information about your illness that you do not want to know?
- What brings quality to your life? What do you value? What is important in your life that gives it meaning? For example: being able to live independently, being able to recognize important people in your life, being able to communicate, being able to eat and taste food, spending time with friends and family.
- Think about the care you might need if you are near the end of life. What worries or fears come to your mind? For example, struggling to breath; being in pain, being alone, losing your dignity, depending entirely on others, being a burden to your family and friends.
- If you developed a critical illness, life support or life extending treatment might be offered to you. What would you be willing to trade for the chance of gaining more time to live? Would the burdens of certain treatments--inability to communicate, loss of control over body functions—be acceptable you if there was even a slight chance of gaining more time? Would your feelings change if there was little chance of recovery?
- If you understood that you were near the end of your life, what might make the end more meaningful or peaceful for you? For example, family and friends nearby, dying at home, having spiritual rituals performed, listening to music. Is there someone who could provide valuable information to your substitute decision maker to help them make future decisions?
Lessons that we have learned on 8 North.
- Our core group of “assessors” was too small. So we expanded the role to all nurses on the ward.
- Coordinating and scheduling the conversation was often a challenge.
- We soon came to the realization that there is a lot of interest in Advance Care Planning and that the frontline staff were interested and eager to engage in the process.
- The patients for the most part were open to having a values based conversation about what is important to them in life.
The next steps are spreading Advance Care Planning discussions to patients ondialysis and documenting the discussions into the electronic medical record. We also will be bringing our results to the physicians on staff at Health Sciences North. Later, we will lower the age of entry into the program and eventually spread this initiative throughout the community.