Looking to start a conversation
Mesa County physicians aim to talk more about end-of-life care in 2016
Millie was 89 years old and had congestive heart failure, Type 2 diabetes, mild dementia, osteoporosis, hypothyroidism, atrial fibrillation and osteoarthritis.
Her daughter insisted she have a mammogram, so she had one performed and a lump was found.
She came to the hospital for a needle biopsy of the lump, and never left.
“One thing led to another in a cascade of problems,” said Dr. David West, vice president of medical affairs for HopeWest Hospice. “Millie essentially died of a needle breast biopsy.”
Millie’s story is one that West tells to illustrate the importance of advanced directives and making sure that a patient’s quality of life at the end of life is addressed. Since he started his residency 37 years ago, West has seen patients go through a lot at the end of their lives, and can tell numerous such stories that show there are significant costs to decisions like these — both financial and emotional.
West told this story and many others in his presentation last week to the Mesa County Physicians IPA, a group of 100 primary-care doctors and 188 specialists who choose a topic each year to focus on, with the aim of improving patient care. This year, the organization chose advance directives and end-of-life care.
In the past, the group has studied and discussed everything from managing chronic pain to diabetes and improving communication about patients across the medical neighborhood, according to Sandy Randall, the group’s executive director. The professional development offers an incentive program for physicians who complete the course and implement the steps toward improving patient care.
“It doesn’t just apply to the elderly, it applies to all of us,” Randall said. “And this year, it’s about educating physicians — where is your comfort level in discussing these topics with your patients?”
It’s not an easy conversation to have, but doctors in Mesa County are contemplating how to talk to their patients about how to plan for end-of-life care. The question of how much a person is willing to endure to remain alive, and what their quality of life is as they approach death, is an intensely emotional and personal topic, but an important one.
“We’re in this spiral of doing ever more tests and ever more hospitalizations and it has reducing returns as we get older and now more and more evidence is showing that some of it is not only not helpful, it’s harmful,” West said. “We should be real careful of what we’re doing, be real careful of what patients want and make sure to make a plan that reflects what they want.”
West said the medical community needs to embrace a new culture of helping chronically ill patients, or those who are at the end of their lives. This means allowing them to die when it’s time, to let the patients have their hopes and wishes known and to let patients experience death with dignity, without pain and suffering.
Another reason to focus on palliative care is that Americans spend a lot of money on high-cost, low-value care at the end of people’s lives, and doctors have a habit of not being conscientious of the financial burden.
“Doctors continually underestimate — they’re blind to the costs, which is a bit of an unrealistic way to do anything in life,” West said. “If you were building bridges and you were blind to the cost, maybe you would put gold plating on the sides, but medicine has been allowed to do that.”
Not only is communication vital for making sure patients don’t endure procedures against their wishes, even after they may lose the ability to communicate those choices, but also because it helps doctors ensure they’re doing what’s best for patients from a holistic point of view. Advance directives and conscious planning for palliative care can help avoid unnecessary procedures or side effects, and also minimize the cost of end-of-life care.
Advance directives are documents that tell patients’ family members or caregivers what they want in relation to health care decisions, in case the patient can no longer make those decisions. They can include everything from making decisions about organ donation to a do-not-resuscitate order (often called a “DNR”), or a MDPOA (Medical Durable Power of Attorney) or MOST (Medical Orders for Scope of Treatment).
Using the correct tool for the patient and the right timing is important, and it’s a very case-by-case situation, which reaches across medical specialties.
“It should be all of us concerned about the welfare of the patient,” West said. “No matter how hard we fight, our patients, 100 percent of them are going to die.”
About two-thirds of the patients coming into HopeWest Hospice have an advance directive, West said, noting that most Americans want to die at home, yet 65 percent of them die in hospitals or nursing homes, according to the Centers for Disease Control and Prevention.
Ultimately, this is about learning how to have the conversation of what patients want, what’s best for them and preserving quality of life, given how much time someone may have left.
Recently, West encountered a patient in a nursing home who was prescribed six different kinds of eye drops for glaucoma. The patient, suffering from dementia, spent most of her time laying in bed with her eyes closed, not communicating with anyone.
“The nurse comes in and they have to pin the patient’s head to the pillow and you have to hold them down and pry their eye open to put in an eye drop,” he said. “It’s not really torturing the person but to me, why are we doing that? What is the point of treating that patient with an eye drop that treats their glaucoma when they don’t ever open their eyes, they don’t sit up and they don’t know what’s going on? To me, this is about asking, what can I do to make tomorrow a better day for them?”
It’s important for physicians to be willing to discuss these options with patients because they understand the possible outcomes. Without the knowledge of complexities of disease, it’s hard for patients to make an educated decision about their options.
As of Jan. 1, medical professionals have the ability to bill insurance companies, Medicare and Medicaid for advance care planning.
“We can’t use the excuse, ‘I don’t have time,’ or ‘I don’t get paid for it’ anymore,” West said.
Sometimes it takes courage for doctors to address end-of-life issues, instead of just treating symptoms, and it’s not something that’s taught in medical school.
At a presentation to the physicians’ group, Dr. Bill Kelley asked what documents West suggested that doctors should be turning to to facilitate these conversations.
At this point, the group is reading Atul Gawande’s book “Being Mortal,” and talking about how to incorporate his seven questions that can help them have those important discussions.
“How to talk about death and dying is something that is really quite new,” West said. “I was taught nothing about this.”