"Well, I'm glad we talked about options. Hospice sounds like it could give us what we're looking for, but I don't know...it's 'hospice.' I know it's just a word, but it's scary."
Sometimes we change the direction of our thinking and the actual decisions we make based on labels (read Post 46: How Being a "Fighter" Can Alter Your Path). For this reason, some medical social workers and palliative care specialists (read Post 1: What Exactly Does a Palliative Care Specialist Do?) attempt to describe hospice services first - at which point patients may say, "Oh, that's the support I want at home. How do I get that?" - prior to naming the services as "hospice" - at which point people may change their minds and say, "Oh, that's hospice? I don't think we're ready for that then."
Erroneous preconceived notions about hospice can result in a person (or family member) from considering hospice as a potential medical path even when the goals of hospice align best with their priorities and values. In Post 56: Debunking Common Myths about Hospice - Part 1 of 2, I clarify five common misconceptions about hospice. Below are five additional facts that are commonly misunderstood:
1. Hospice is a group of services that go to you; it is not a place that a person goes to.
Misconception: "I promised my parents I would take care of my brother. I would never abandon him in a hospice or nursing home."
All our lives we are used to working with medical providers to improve our vital sign numbers, our lab values, and that disease on the CT scan. We are used to hearing "Let's see what we can do to lower your hemoglobin A1c" or "Your cholesterol level is high. What do you normally eat?" or "All you need to know is that you went from having 8 spots on your liver to 4 spots."
It is a huge change in mindset to consider hospice support. Instead of questions we typically expect from healthcare providers, hospice team members may ask "How much is fatigue affecting your ability to do the things you really want to do each day?" or "How are you and your family coping with all these changes?" or "How has your disease impacted your spiritual health?" (Read Post 2: Five Major Ways Palliative Care Differs from Hospice.)
Hospice is a philosophy that prioritizes treating the whole person (and whomever the person considers family) while attempting to provide physical, emotional, mental, and spiritual comfort. Hospice team members go to where ever the patient happens to be living, for example home or nursing home, and they try to help this person find quality of life however this individual were to define quality of life (read Post 54: Why Should I Care about My "Goals of Care"?).
Sometimes a person with severe symptoms that cannot be alleviated at home may enter an inpatient hospice unit (a "hospice hospital") for the goal of controlling these symptoms so that the person could return to their previous place of residence, such as their home. However sometimes a person with difficult to control symptoms, such as severe agitation or severe anxiety, is actually in the process of dying. In this case, a loved one may end up dying within hours or days in the "hospice hospital."
2. Hospices provide support for those with months to live, not just those with days to live, and a person could receive hospice support for longer than six months.
Misconception: "I don't think my mom is ready for hospice. She's alert and she's of sound mind. She likes to watch her Westerns. She's not dying tomorrow. She still has a lot of time."
A person is eligible for hospice support if they say they want to focus on comfort and quality of life rather than "life prolonging" or "disease treating" measures AND if doctors say that the average prognosis for people with similar medical and health conditions is months (specifically "six months or less"). However an individual person could live a much shorter or a much longer time than this average prognosis. They do not have to be homebound, bedbound, nor dying with days to live to be eligible for hospice support (read Post 25: When to Consider Hospice Support - Example #2).
If a person in a hospice program were still in the program after six months, the hospice medical director could recertify, stating the person on average has a "six months or less prognosis" based on statistics and research. Or, the hospice medical director could “graduate” a person if this person were to stabilize, or even flourish, with hospice support. It is not uncommon for a person with for example, severe congestive heart failure to improve due to the increased personalized attention of the hospice team.
Anyone who graduates from a hospice program could be re-evaluated for hospice re-enrollment if their health or medical situation were to worsen in the future.
3. The hospice team supports you in making the best of each day while allowing nature to take its course; it does not make death come sooner.
Misconception: "My aunt was admitted into hospice, and then she died right after. I don't want that for my wife. I don't want her to go into hospice just to die. "
Although hospice teams provide maximum benefits when they are able to provide patient and family support for the months that a person is eligible, "hospice" unfortunately often does not come to mind until a loved one is actively dying with hours or days to live. Sometimes the timing of these two events (hospice admission and a loved one dying) is what causes family members to mistakenly believe that one event was the direct cause of the other. However, people do not die from being admitted into hospice; they die from their medical illness or disease.
4. Hospices cannot stop you from going to the emergency room (ER) if you think you need ER care.
Misconception: "Don't join that hospice. It's a terrible insurance. They don't let you see the doctor or go to the hospital."
If a person receiving hospice support were to change their mind and felt that a hospital level of care would be helpful (or if they had misunderstood hospice's services in the first place), they may revoke hospice at any time and go to the ER. Revoking usually entails a phone call notification to the hospice team.
Then, if in the future one felt that hospice care was more in line with their goals of comfort and quality of life, they could then be re-evaluated to receive hospice support. They could decide to enroll in the same hospice agency as before or with a different agency.
5. You could potentially keep your primary care physician when you enroll in a hospice program.
Misconception: "If I go into hospice, I won't be able to see my PCP (primary care physician) anymore. I trust my doctor, and I don't want to give him up."
When a person accepts hospice medical support to assist with providing comfort and quality of life at home, they are saying, "Going to the specialists, the clinics, the ER, and the hospital are no longer helpful to me. They are burdensome, and they don't make my quality of life better. I want medical care brought to me at home the next time I have a concerning or uncomfortable symptom" (read Post 27: When to Consider Hospice Support - Example #3).
Therefore, hospice programs do not force a person to give up their doctors. Instead the patient has decided that going to see their specialists is a bigger burden than benefit. Or they realize that seeing their specialists is no longer changing the course of worsening health, strength, stamina, alertness, or weight.
If a person's PCP felt comfortable with managing end of life symptoms (whether "end of life" be months, weeks, days, or hours) and if they were willing to be available by phone day and night (because symptoms can occur at any time), then their PCP can usually remain their primary medical provider in the hospice program. However, many PCP's feel uncomfortable with managing this type of medical care because controlling symptoms at the end of life may not be their area of expertise. For this reason, people joining a hospice program often end up with the hospice medical director taking over all medical care geared towards physical and psychiatric comfort.
Remember, as with most healthcare and life decisions, the decision to accept or not accept hospice support does not have to be a final choice. If a person is eligible, they may find that receiving hospice support for a time is helpful. If they were to stabilize or get stronger under hospice support, they may choose to revoke hospice and resume seeing their previous PCP and specialists. They may then later choose to be re-evaluated for hospice support if their medical or health situation were to change.
The reverse is also true. A person may choose to undergo one treatment path ("I want to see if this chemotherapy will help me") and later change their mind ("That chemotherapy was awful. I don't want to go back to the oncologist. I just want to focus on making the best of each day, NOT in an infusion center, clinic, or hospital. I'm going to call that hospice person back and give hospice a try").
I hope by debunking common myths about hospice people feel more empowered as they attempt to make healthcare decisions that are utmost in line with what is most important to them (read Post 16: Medical Decision Making 101).