Difficult Conversations: Talking about the end of life
End-of-life discussions can be awkward and a little terrifying, but they make all the difference between a good death and bad, health-care panelists said June 26 during a crowded, 90-minute discussion about Difficult Conversations at KPCC’s Crawford Family Forum.
A 2011 survey by the California Health Care Foundation revealed that “80 percent of us say we want to talk to doctors about end of life, but only 7 percent of us actually do,” said moderator Stephanie O’Neill, KPCC’s health care correspondent. “And while more than 70 percent of us said we want to die at home...almost 70 percent of us are dying in nursing homes and hospitals.”
Spelling out your wishes in an Advance Health Care Directive or on a bright-pink POLST (Physician Orders for Life-Sustaining Treatment) form is vital to ensure your end-of-life wishes are fulfilled, the panelists said, but our tendencies towards denial make the conversations and decisions easy to avoid.
O’Neil recalled how she was shut down completely when she tried to bring up end-of-life talks at a recent dinner party. And panelist Dr. Yutaka Niihara, president of Emmaus Medical, Inc. and professor of medicine at the David Geffen School of Medicine at the UCLA Division of Medical Oncology/Hematology Harbor-UCLA Medical Center, said he’s had patients at the end-stage of cancer, barely able to walk or breath, who still believe they aren’t going to die, “and you have to prepare these people for what’s coming.”
Such conversations are even more difficult now, when doctors have such limited time with patients, but there are also many rewards, said Dr. Esiquio Casillas, regional medical director for the Program for All Inclusive Care for the Elderly and Senior Services at AltaMed Health Services.
“Part of our Hippocratic Oath is to avoid futile care, to avoid overtreatment and things that cause harm,” Casillas said, “and not having those conversations with your patients can obviously lead to futile care. But when you have these conversations and bring the family full circle, to their perspective about the meaning of life…, it’s not negative at all. It’s some of the best experiences you can have as a provider.”
The trick is the talk, and helping people understand what end-of-life measures can really mean. For instance, CPR on a relatively young and healthy person is one thing; but for a a sick and frail person, “CPR can be very ugly,” O’Neill said.
Only 1 percent or less of elderly, infirmed patients survive CPR, Casillas said, and of those who do, 50 percent wish they hadn’t had it at all, because of the injuries and pain from the necessary violence of the procedure, or brain or organ damage from lack of oxygen.
“For me, it comes down to quality of life,” said the third panelist, Gloria Nava, a medical social worker at Sanctuary Hospice. “You ask the individual, ‘What is quality of life?’ Would you rather be in excruciating pain, trying to recover from broken ribs and the wounds that come along with it (CPR) or allow the natural process to occur?”
Quality of life considerations are one of two reasons why end-of-life conversations are important, O’Neill said. “They also free your family of the emotional burden of having to make difficult decisions at the end of your life, at a time when the family is in crisis. It’s just not a good time to be making decisions, so it’s a big gift when we do this for our family, and when our parents do it for us.”
The forum also included a brief discussion with retired Studio City family physician and University of Southern California (USC) medical professor Dr. Ken Murray, whose 2013 essay “How Doctors Die” went viral; Dr. Pamelyn Close, director of Adult and Pediatric Palliative Care at the Keck School of Medicine at USC, and Mary Beth Perdue, field organizer for Compassion & Choices which is lobbying to create a right-to-die law in California similar to the laws in Oregon and Washington.
You can watch the entire discussion above, or read more about end-of-life issues on KPCC’s Impatient Blog. In the meantime, here are some highlights about end-of-life discussions and creating a POLST:
Completing a Physician Orders for Life-Sustaining Treatment (POLST) form is the best way to ensure your end-of-life wishes are carried out.
Advance directives are fine, Casillas and Niihara said, but because they aren’t standardized, they can be harder for medical personnel to decipher. In the event of an emergency, if the patient’s wishes aren’t easy to understand, the medical personnel usually proceed with life-saving treatments, such as CPR or intubation, Casillas said. POLSTs are standardized forms, usually reproduced on bright-pink cardstock, so they are easily spotted in patient records or posted at home. The card stock makes them sturdy enough to carry when patients are away from home, as well, O’Neill said. You can download the POLST form here.
It’s hard to overstate the importance of a POLST, especially for patients who don’t want extraordinary measures.
The document should be visible and easily accessible, Casillas said, because you never know what will happen. “What if your neighbors come in to take care of your mom while you walk around the block to get some fresh air for 10 minutes. If you haven’t filled out the form and something happens to your mom, they don’t know her wishes (not to be resuscitated). They’ll call 911, and the medical personnel will respond and do everything in their power to resuscitate that individual.”
Before you fill out the form, make sure you know what you’re getting into.
Sometimes people think they want to go down fighting, until they see what procedures like intubation, tube-feeding or CPR entail, or the injury they can cause, Niihara said. Studies have shown that tube feeding for dementia patients, for instance, increases the patient’s chances of aspirating or getting pneumonia.
Another intervention—intubation—can be good or bad depending on the patient’s condition. “Intubation is when you put a plastic tube into the breathing pipe, and when you do it, it usually injures or inflames the vocal cords,” Niihara said. “When we intubate before surgery, we can sedate patients to make it easier, but in a CPR situation we have to move quickly and sometimes the people are half conscious and it’s very very uncomfortable. If you’re going to save a life and provide meaningful years afterwards, then the procedure is worth it, but if it’s just being done to fulfill an advance directive or living will, even though it’s futile, then I think it’s a waste.”
Hospice can help the terminally ill live longer, more comfortable lives, but most wait too long to use it
“A lot of times people equate hospice with giving up, but the literature shows that among patients with an end-of-life diagnosis like end-stage cancer, those who opted for aggressive chemo ended up not living as long as people on hospice,” Casillas said. “It may seem counter intuitive, but when you’re focusing on quality of life instead of running back and forth to the oncologist for chemo care, in many cases it’s a better option than aggressive interventions which usually result in futile care.”
In fact, said Nava and Niihara, sometimes patients do so well on hospice that their health improves enough to let them “graduate” out for a while, but only in situations where they’ve been on hospice for awhile. Patients usually need at least six weeks to see the good effects of hospice, Niihara said, but most patients wait too long. Right now, the average amount of time people stay on hospice is two weeks before they die.
How do you get on hospice?
Doctors will recommend hospice when they feel there are no more curative treatments and the patient has about six months left to live, Niihara said. “I tell my patients that hospice has this connotation that it equals death, but it’s really a privilege, because if you qualify for hospice you get all this attention that the patient would not otherwise get—antibiotics, pain medications, equipment, 24-hour access to doctors and nurses, all in their home—instead of going back and forth to the hospital or doctor, where their needs are not being met as quickly.”
Once you go on hospice, can you change your mind?
Absolutely yes, the panelists said, just like you can change your POLST or Advance Directive, “as long as your mind is sound,” Niihara said. “If your mind is not sound, somebody else will try to make the decisions for you.” And sometimes, Niihara said, a patient on hospice can get well enough that it makes sense for them to resume chemo treatments, such as lung cancer patients, or go onto new medications or treatments that have become available. This was particularly true with HIV patients.
The key, the panelists said, is whether all the treatments and interventions will ultimately help the patient make a meaningful recovery. If yes, then those treatments make sense, Niihara said, “but so many treatments are not only futile but causing pain and suffering, not only to the patient, but to the family and our economy.”