Below is an Article by Richard Underman, January 12, 2015
Conversations around end-of-life medical care can be challenging. Consider someone I’ll call Mrs. Jones, an elderly patient with advanced heart disease. When her doctor asked her to discuss the kind of care she wanted to receive at the end of her life, Mrs. Jones said that she had devoted a lot of thought to the matter and had clear instructions she wanted her family to follow.
First, Mrs. Jones wanted to be buried near her family – above ground – and she wanted her grave to be covered with yellow and white flowers. Second, she wanted to be laid out not in a dress but in her nightgown and robe. And finally, she wanted to be buried with a treasured photograph of her boyfriend, which showed a handsome young man in military uniform.
But her doctor was asking a different question. Specifically, she needed to know how Mrs. Jones wanted the medical team to care for her as she was dying. Mrs. Jones said that she hadn’t thought about end-of-life care, but she would like to learn more about her options.
After discussing the choices, Mrs. Jones expressed some clear preferences. “I know for a fact that I do not want to undergo chest compressions, and I don’t want anyone using tubes to breathe for me or feed me.” Her doctor arranged for Mrs. Jones’ daughter to join the conversation. The conversation wasn’t easy – Mrs. Jones and her daughter cried as they talked – but afterward they were grateful that they had shared everything so openly.
Shillpee Sinha, MD, Mrs. Jones’ doctor, has these conversations every day. She is the lead physician for palliative care where she specializes in the care of dying patients. She also teaches medical students and residents how to provide better care for patients at the end of life.
Sinha is part of a relatively small cadre of such doctors nationwide. It is estimated that only about 4,400 doctors specialize in the care of terminally ill and dying patients. There is only one palliative care specialist for 20,000 older adults living with severe chronic illness.
Doctors can help initiate conversations about end-of-life care.
On average, 6,800 Americans die every day. The majority of deaths are anticipated. Consider that about 1.5 million people enter hospice care each year. This means there is ample opportunity for may patients to talk with their doctors and family members about end-of-life care.
Before patients can explore and express their preferences about dying they first need to have a conversation like the one between Sinha and Mrs. Jones. In too many cases, no such conversation ever takes place. Patients often don’t know what to ask, or they may feel uncomfortable discussing the matter. And doctors may never broach the subject.
At one end of the spectrum, doctors can do everything possible to forestall death, including the use of chest compressions, breathing tubes, and electrical shocks to get the heart beating normally again. Of course, such actions can be traumatic for frail and dying patients. At the opposite end, doctors can focus on keeping the patient comfortable, while allowing death to proceed naturally.
And of course, end-of life care can involve more than just making patients comfortable. Some patients lose the ability to eat and drink, raising the question of whether to use tubes to provide artificial hydration and feedings. Another issue is how aggressively to promote the patient’s comfort. For example, when patients are in pain or having trouble breathing, doctors can provide medications that ease distress.
Another issue is ensuring that the patient’s wishes are followed. This does not always happen, as orders can be lost when patients are transferred between facilities such as hospitals and nursing homes.
Advance care planning in Canada
Advance care planning is when you talk about possible scenarios around your condition, health and personal care. Your wishes about your health and personal care are then used to create a written plan. This is usually specified in a living will or a written medical or advance directive.
Your written plan will help your health care providers and your family feel more comfortable. They will be more confident in making decisions on your behalf and guiding your care if you become unable to do so.
You can make changes to your advance care plan at any time, even after you have given it to others. If you do make changes, you should share the updated copy with your substitute decision maker and health care providers.
Every province has legislation for advance care planning. However, the laws are not consistent across the country. The terms and forms that are used may differ between provinces and territories.
Like dew drops
on a lotus leaf
—Senryu, died June 2, 1827