Hospice Care for Dementia

Today I want to talk about a topic that can be sensitive for some Careblazers: Hospice.

There are many myths surrounding hospice care and these myths and stereotypes often prevent people from seeking care that could provide them with wonderful additional resources for both their loved one and themselves. 

If you would rather watch a video on this topic, click here.

First, as a quick reminder, hospice is medical care that is focused on keeping or improving quality of life for people who have a condition that is getting worse and that is not likely to be cured. 

When people hear the word hospice, they often jump to thinking about a patient who is bed bound and hours away from passing. While this is a situation that hospice can provide service in, it is not the only situation in which hospice is appropriate. Furthermore, this image often drives people away from seeking this service that can be invaluable in a situation like caring for someone with dementia. 

Myth 1: If we chose hospice for my loved one, it means I am giving up on them.

This is one I hear a lot from caregivers and, sometimes, even patients. It seems that people hear the word hospice and automatically associate it with death. This is unfortunate because the main goal of hospice is to promote quality of life. In other words, the purpose is to ask the person (or their caregiver) how can we help you to have better days. The choice to enroll in hospice does not mean giving up but rather can be about choosing to have more quality time with your loved one (LO). 

Myth 2: To qualify for hospice, you have to go to a hospital for care

Careblazers, your LO does NOT have to go to a hospital or nursing home to be enrolled in hospice. Hospice can be provided in any preferred setting. Many people chose to have hospice care in their home. However, it is up to you and your LO to determine what the best setting is for hospice care. 

Myth 3: If we chose hospice, we will have to give up our LO's primary care provider 

When someone enrolls in hospice they are given a hospice care team that has staff who are available 24/7, which is something a primary care provider is not able to do. However, your LO's primary care provider is likely the provider that knows them best. For this reason, hospice companies work with your LO's primary care provider to create an individualized care plan for your LO.

Myth 4: Once we choose hospice, we can’t get medical treatment for new illnesses my LO may get.

 This is something that I hear a lot from Careblazers and this is simply not true. Hospice means that you are focused on providing a better quality of life for your loved one. If your loved one is given a new diagnosis or has a diagnosis unrelated to their hospice diagnosis they can seek care for it. For example, something that comes up a lot is that someone may qualify for hospice care with a diagnosis of dementia or other life limiting illness but may acquire a urinary tract infection or UTI and can seek curative treatment for that UTI. 

Myth 5: Hospice is only for someone who is about to die

I alluded to this one at the beginning. People often think of hospice as care that is provided when someone only has days to maybe weeks to live. This is because people often wait too long to enroll in hospice. Your LO can chose to enroll in hospice as soon as they have been determined by a medical provider to have a life limiting condition. This means that your LO may have many many months of access to the additional services of hospice, but only if you ask about it and enroll early! 

Myth 6: People die quickly when on hospice.

There are a lot of myths like this out there. The facts are that there are people who are really sick who are enrolling in hospice and, as I mentioned earlier, people often wait too long before enrolling and therefore hospice is only involved for a very short period of time. This can give the illusion that people who decide to enroll in hospice, die quickly.

This is actually the opposite of the truth! In an article in the American Family Physician from 2018 called Life Expectancy in Hospice Care, the authors outline the differences observed between people who received a terminal diagnosis and either did not enroll in hospice care, received 3 or less days of hospice care, or received 4 or more days of hospice care. The authors summarized that those who did not receive any hospice care lived, on average, 6.1 months after receiving a terminal diagnosis, whereas those who received 3 or less days of hospice care lived, on average, 6.5 months. Now here is where it gets interesting, those who were diagnosed with a terminal illness and received 4 or more days of hospice care live, on average, 10.2 months! Careblazers, that is a difference of over 3 months longer for those who were enrolled in hospice earlier!

Myth 4: All hospice companies are the same.

 When people hear the word hospice, they often have a story about someone they knew who was on hospice and it was either great or the care they received was poor. Thus people often have some very strong opinions about hospice care. The fact is that there are many hospice companies out there and they are not created equal. All hospice companies have to meet certain state requirements to be considered hospice; however, each company may have differences in how they meet those requirements as well as the level of support they may provide. 

Myth 5: Hospice and palliative care are the same.

These two services are often confused with one another but they are not the same. Palliative care is given along with regular medical treatment or curative treatment. Hospice focuses on symptom management. This can be a confusing topic for many people. Make sure to tune in soon as I will be covering these differences in more detail in the near future!

There are many other myths about hospice. What myths have you heard? What concerns do you still have? Leave a comment below telling me about your experience!