End of life care: Why hospice doctors ask before they tell
Everyone processes bad news in their own way. If you or a loved one has been diagnosed with a life-limiting illness like cancer or Alzheimer’s disease, you might feel shock, fear, anxiety, detachment, calm, confusion or a mix of feelings.
In vulnerable times, it’s important to have clear communication with your health care team. But talking to doctors isn’t easy for everyone. And not all doctors, despite their best intentions, are great at discussing sensitive end-of-life issues.
For help, consider speaking with a physician or nurse practitioner trained in hospice and palliative medicine. They are expert communicators and patient advocates, according to Christine Nevins-Herbert, M.D., medical director for HopeHealth.
“We focus on comfort, quality of life and continuing the hard conversations about the big picture: where you are going and what you are hoping for,” she says.
Studies show that candid communication with palliative care doctors and nurses can improve quality of life, reduce the use of unhelpful treatments, and result in positive family outcomes. So what do these talks look like?
What do patients talk about with hospice or palliative care providers?
Anyone with a non-curable disease can benefit from a palliative or hospice consultation, no matter what stage of the illness. (Learn the difference between palliative care and hospice care.)
At HopeHealth, here’s what you’ll discuss in this consultation:
- Your understanding of your health situation
- Your wishes or goals of care
- A plan for accomplishing your wishes
1. Understanding your health situation
By the time you meet with a hospice or palliative care provider, no doubt you’ve already talked to plenty of other doctors. Did you understand what they said?
“One mantra for providers in hospice and palliative care—and really should be in all parts of medicine—is ‘ask before you tell,’” says Dr. Nevins-Herbert, who uses conversation starters to guide discussion.
- What is your understanding of where you are with your illness now?
- How much information would you like from me about what is likely to be ahead with your illness?
You might be crystal clear on the situation. You understand your condition, prognosis and treatment options. You’re comfortable asking questions and discussing medicine, or you have family members who can fill you in.
Alternatively, your picture might be hazy. “I have cared for patients on chemotherapy who did not realize their particular treatment was intended to extend their life and not cure the disease,” says Jennifer Ritzau, M.D., director of palliative care for HopeHealth.
What causes communication breakdowns between patients and providers? There could be any number of reasons. Discussing end of life can be daunting for the patient and provider alike.
Yet while these conversations are never easy, they can be done well.
“It is essential that patients know why a treatment is recommended to ensure it aligns with their goals and wishes,” says Dr. Ritzau, who directs HopeHealth’s Complex Care Conversations program.
2. Establishing your wishes for end-of-life care
Once you and your provider share a common understanding, the next step is to decide what you wish to achieve in your care plan.
- What abilities or activities are so critical to your life that you can’t imagine living without them?
- How much does your family know about your priorities and wishes?
- If you become sicker, how much are you willing to go through for the possibility of gaining more time?
In the short term, most patients want to be out of the hospital and back at home, in less pain. (HopeHealth Visiting Nurse is certified to provide palliative care at home.)
After that, many patients express wishes to:
- Feel safe or loved
- Accomplish items on a bucket list, like travel or learn a new skill
- Live long enough to see an important event, like a wedding or the birth of a grandchild
- Maintain their independence, or not be a burden on their family
Some patients want to stop aggressive treatment but worry that decision will disappoint loved ones. “They feel like they’re stuck on a treadmill and can’t get off,” says Dr. Ritzau.
“We help them draw a line in the sand between what they want and don’t want. Palliative care gives patients a pathway to achieve their goals and permission to express their wishes,” she adds.
3. Making a plan
After hearing your goals, your hospice or palliative care provider will help you develop a plan to achieve them.
Symptom management will be a major priority if you’re suffering from the symptoms of disease (such as pain or shortness of breath) or the side effects of treatment (such as nausea or fatigue).
“We look at your current care plan and identify gaps in care. After communicating with your existing doctors, we might recommend a change or addition to relieve symptoms,” says Dr. Ritzau.
Another part of end-of-life planning is financial and administrative housekeeping. Have you identified someone in writing to be your decision-maker? Have you made clear your wishes regarding interventions like resuscitation, artificial nutrition and hydration?
Your hospice or palliative care provider will make sure these wishes, called advance directives, are documented in your medical record for access by any hospital or medical facility.
One mantra in hospice and palliative care—and really should be in all parts of medicine—is 'ask before you tell.'
Finally, good planning means you have the information you need to be your own voice.
“A big part of our job is to empower the patient to ask tough questions of their cardiologist or oncologist or other providers about potential treatments,” says Dr. Nevins-Herbert.
“We give them specific questions to ask, like ‘what is the goal of this next line of chemo? What are the potential risks and benefits? Can I stop this treatment if side effects are too much?’”
Consider working with a hospice or palliative care provider to develop a care plan centered around your goals. It could ease suffering and bring comfort and clarity to you and your family.