"Don't say the 'h' word!" the daughter exclaimed.
"Um...what is the 'h' word?" I asked.
"Hospice," she whispered.
For many of us, the word "hospice" as a potential treatment plan would trigger strong emotions because "hospice" often represents voicing out loud the fact that someone - whether it be us or a loved one - is possibly (perhaps even likely) dying. Sometimes the word "hospice" evokes recoil, fear, dismay, anger, or denial because of preconceived negative beliefs and thoughts associated with hospice. As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I help clarify misconceptions about hospice so people can make deliberate, informed decisions about whether hospice would be in line with their goals of care or not (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2 and Post 16: Medical Decision Making 101).
Below are five facts about hospice that people commonly misunderstand:
1. You can receive hospice support even if you are still walking about and getting around.
Misconception: "I don't think she's ready for hospice yet. She still walks around, and she likes to go to the store."
One may still have good strength and ability to move around despite what is written in their medical chart. For example, a person with stage 4 cancer who opts to forego chemotherapy treatments because they do not want to live with the side effects of those treatments may initially have the stamina to go hiking when they first join a hospice program. If a person accepted into a hospice program wanted to attend a family reunion across the country, their hospice agency may coordinate with a local hospice at the person's final destination so that they receive continuous hospice medical support before returning home under the care of their home hospice agency. One does not need to be homebound nor bedbound to be eligible for receiving hospice support.
To be eligible for hospice support, doctors would have to say that the average prognosis for a person with the same medical or health condition as you would be months, and you would have to say that you are at a point where you would want to focus on comfort and quality of life with medical care outside the clinic or hospital instead of "invasive," "aggressive," or "life prolonging" tests, treatments, and procedures in the clinic or hospital (read Post 2: Five Major Ways Palliative Care Differs from Hospice).
2. The priority is relieving symptoms, not sedating a person, when hospice teams offer morphine.
Misconception: "Don't hospices just give you morphine until you fall asleep and die?"
If a person prioritized alertness over complete symptom relief, the hospice team should honor those wishes. Of course, the hospice team or any other healthcare provider may not know what your personal priorities are, so it is important to communicate your priorities with all your healthcare providers, including hospice team members.
Sometimes pain or breathing symptoms may increase (due to the medical illness, disease, or dying process) to such a point that a person or their family members may change their minds and say that they would prioritize symptom relief over complete alertness. The hospice team, and all healthcare providers, should prescribe the minimum opioid doses needed to relieve symptoms, however sometimes symptoms relief requires such a high dose of opioids that the person may experience side effects of decreased alertness (read Post 31: Three Common Misconceptions about Opioid "Pain Pills").
3. Hospice teams continue all medications that help you maximize comfort and quality of life; they do not arbitrarily stop medications.
Misconception: "I heard that when you go into hospice that they stop all your medicines. They only give you morphine, that's it. I don't want that for my husband."
The hospice team does streamline medications to focus on those that provide comfort, sometimes adding additional medications to treat uncomfortable symptoms, whether it be severe constipation or persistent hiccups.
As a person's strength and stamina worsens, swallowing each pill may become a bigger ordeal. "He can't swallow pills anymore, so I crush them and put them in applesauce. Sometimes he'll take them and sometimes he won't." The hospice team will try to decrease this "pill burden" by removing medications that are not immediately helpful, for example the statin cholesterol medication whose purpose is to reduce the ten-year risk of heart attack and stroke but not serving any immediate purpose for a loved one who is not expected to live years (read Post 74: "Maybe It's Time to Let Go of Some Medicines" or Why Your Doctor Might Deprescribe).
If a person believed that certain over-the-counter medications, herbals, supplements, or other medications were providing benefit in one's overall sense of well being, the hospice team would encourage the continued use of those medications for as long as the burden of swallowing the pills did not outweigh the peace of mind in taking them. Most hospice teams would also order oral antibiotics to treat an uncomfortable urinary tract infection or pneumonia; most would not be able to provide IV antibiotics or other IV treatments. If IV treatments were in line with a person's goals, most likely their goals would not be in line with what most hospices are able to offer, specifically a hospital level of care.
Therefore, hospice teams do remove medications, and they also add medications. Since so many of us are used to taking medications for prevention ("I don't have high blood pressure, but I've been taking this baby dose of lisinopril for years to protect my kidneys from kidney failure."), it can initially be alarming to have an outside medical team make BIG changes in the preventive care medications we are used to taking. If you were to ever feel this way, let your hospice nurse know so that you can discuss each medication one by one. Emotional trust that you are receiving good care and mental peace of mind are just as important as physical comfort.
4. You continue to eat and drink as much as you want while receiving hospice support.
Misconception: "I thought if you went into hospice, they stop giving you food to eat. We're Catholic, and we don't believing in starving to death or doing anything that will hasten death."
A person receiving hospice support can eat or drink whatever they desire. If their medical illness already required certain diet or fluid restrictions ("If I eat a tortilla, my blood sugar shoots up to the 400s" or "If I eat Chinese takeout, my feet will swell up from the salt because I have really bad congestive heart failure"), the person may want to continue these particular diet or fluid restrictions to prevent uncomfortable flare ups or complications from their disease. Otherwise, hospice encourages eating and maintaining strength for as long as that is the person's goal.
Sometimes a person is admitted to the hospice program when they are already actively dying from their illness or disease. They may already have a prognosis of only days. They may already have significant loss of appetite and weight loss from the dying process (read Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3). In these situations, a loved one dying would be from their end stage disease or illness, not from "being in hospice."
5. You can receive hospice support whether you have a DNR (do not resuscitate) order or not.
Misconception: "We don't want her to be a DNR. We still want her to get CPR if her heart stops. Would that keep her from getting hospice help?"
A person's wish to be a Full Code (attempt resuscitation) or DNR [do not attempt resuscitation, also called "allow natural death (AND)"] (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ) should not affect their eligibility to receive Medicare-certified hospice support. Likely the hospice team would intermittently bring up this question because a person's thoughts on whether they believe resuscitation attempts would be helpful if their heart were to stop may evolve over time and over multiple discussions.
I hope the above clarifications (and more in Post 57: Debunking Common Myths about Hospice - Part 2 of 2) help people view hospice as yet another type of medical care - just as one may view urgent care clinic or ICU care as types of medical care - to utilize depending on their medical situations and goals of care at the time (read Post 54: Why Should I Care about My "Goals of Care?").
I hope by being more aware of how hospice can be helpful (or not helpful if they are not in line with a person's goals), one can better advocate for the type of medical care that is best for them or their loved one at a given time.