But “patients know when they’re not feeling well. They know,” she insisted. And when she is upfront with them about their prognosis, “Many are not surprised.”
Many of the dying don’t fear death as much as they fear how they will die, Bitar said. “It’s the in-between part people fear the most. If you can give them insight on what to expect, that can ease a lot of their concerns.”
No One Wants to Talk About It
However, it is as difficult for physicians to talk about death as patients, Bitar said. “Physicians may think it means they’ve failed their patients.” In addition, she said, oncologists can get overly focused on the tumor and tumor markers, “but I think it’s important to redefine the situation and remember a person is more than their disease.” In the face of incurable disease, instead of hoping for a cure, “You can hope for more time to do something special with your grandchild,” for example.
“We take cardiac arrest and CPR protocols so seriously, yet there is no protocol for people who are dying,” Bitar continued. “It requires an emphasis on compassion, empathy and learning the individual’s needs and that person’s and that family’s grieving process.”
When a person is dying, Bitar said, palliative care physicians focus on treating symptoms rather than the disease, and they let the patient direct the care.
The three main symptoms that need to be managed at end-of-life are pain, delirium and shortness of breath, she said.
In addition, she said, “We get focused on the physical things, when a lot of the stuff is spiritual, such as unresolved family dynamics. It’s amazing how much [physical] pain can be relieved when you address the emotional issues.”
The Dying Process
Since families are often unprepared for the dying process, “They can go into shock when it happens,” Bitar said. But, “no matter how you get there, natural death is similar for everyone.”
It begins with a person no longer wanting to eat. This is a natural reaction to the body starting to shut down and no longer being able to process food. Many families make the mistake of urging the patient to keep eating at this point, which will only make them feel ill, Bitar said. “When you’re dying, your body isn’t working in a way where it can naturally process these things, like intravenous fluids, food. It is no longer absorbed in the same way,” Bitar said.
Many families fear the patient is dying of starvation. “They’re not starving, they’re dying of their disease,” Bitar said. “When they’re entering the active stage of death, it doesn’t bother them that they don’t have an appetite.”
Once the patient has slowed or stopped eating and drinking, they become weaker and weaker, become bedbound and begin to go into kidney failure. When the kidneys stop functioning, toxins build up in the bloodstream. Their level of consciousness goes down at this point, and they go into a “dreamlike state.” The toxins cause their electrolytes to become unbalanced, which causes the heart to go into arrhythmia, and the weakened heart eventually stops.
This “active dying” process generally can take up to two weeks, and the focus should be on comfort and pain control, Bitar said. “In the final hours to days the person may not be able to verbalize their needs, so we have to know by their body language and facial expression what’s going on.”
The patient’s breath may become labored, and they may make a gurgling sound. “’Agonal’ breath is part of the natural dying process,” Bitar said. “It looks like they’re struggling to breathe, but they’re not. Their body is just shutting down. They are too weak to swallow the saliva, so they gurgle. The patient usually isn’t suffering.”
Even if the person can’t speak or they look unconscious, “Never assume they can’t hear,” Bitar said. “Most people fear dying alone. If they still hear their loved ones, that makes a huge difference.”
Many dying patients exhibit delirium, but Bitar emphasized that the patient lacks awareness of their behavior. “It’s possible to be peacefully confused,” she said. “Talk to them and orient them: ‘You’re at home. We’re here.’ Open the blinds and close them at night so they know whether it’s day or night.”
When the patients stops making urine, “You know you’re within 24 to 72 hours of death because the kidneys have failed at that point,” Bitar said.
Natural Death Shouldn’t Hurt
Natural death “doesn’t look pretty, especially if it’s prolonged,” Bitar said. “But in theory, medically speaking, it should be a pleasant way to go. The toxins that build up put you in a dreamlike state that is supposed to be euphoric. It’s not supposed to be uncomfortable.”
We’re a very cure-focused society. Keep going, keep going, keep going, death,” Bitar added. “Sometimes patients are in denial — unwilling to talk about what’s happening. That’s the hardest of them all. That creates a lot of challenges in caring for them at the end of life, for providers and their loved ones. Both are shooting in the dark because we don’t know what the person wants because it was never discussed. That’s a big barrier and it’s tough to overcome. It creates distress and anxiety for everybody.”
Facing a grim prognosis head-on is probably the bravest and most difficult thing a person can do. Bitar said she reminds people that “’Your life is not your disease.’ We try to take a step back and see the whole person. We want to talk about big-picture things, meaningful things. People have to be allowed to be human and talk about what matters most to them at this time.”
****