Hospice care provides important support at the end of life, allowing people dignity and quality of life. Yet, it’s also a topic that’s highly misunderstood.
Part of the problem is that end of life is a scary idea. Many of us avoid talking about it for as long as possible. There are also many myths and misconceptions about hospice, making it even harder to know what’s true.
In this post, we’re looking at some of the less well-known details about hospice. Many of these are positive, but there are some problems with hospice care in the mix as well.
Surprising Benefits and Problems with Hospice Care
1. Hospice Isn’t All About Death
By definition, hospice is end of life care. However, this doesn’t mean that it is focused on death or that patients are giving up.
Instead, hospice is a chance to step back and focus on quality of life.
After all, the process of keeping people healthy and extending life can be arduous. Seniors may need a seemingly endless string of appointments, tests, and perhaps procedures to help them live just a little bit longer.
Such processes can be exhausting, stressful, and may not even help much.
Hospice drops all of this away.
Seniors get the chance to focus on what matters instead, including meaningful connections with family members, thinking about their legacy, and perhaps turning to faith.
If they start hospice when they are still mobile, seniors may also have more free time to get engaged in life. Perhaps they might even go on one last great adventure.
2. The Quality of Care Can Vary
Hospice providers need to provide many basic services, including patient care, care coordination, grief counseling, and caregiver support. However, there’s plenty of variation in the quality and quantity of services.
Research even shows that for-profit hospice companies tend to have fewer extra services and are often less well-staffed.
Indeed, hospice care isn’t always as safe or as helpful as it should be.
There are many cases where things have gone sideways, including patients enrolled into hospice when they didn’t need to be and overdoses of pain medication.
Some people even die in hospice when they weren’t actually that ill beforehand.
Other times, patients may find that their hospice helpers don’t always turn up when they’re meant to, potentially leaving hospice patients in agony.
Families and patients with limited medical knowledge are in a challenging situation here, as it’s easy to go with the first option that’s presented to you.
This is why it’s so important to research the companies your loved one has access to. It also helps to get a second opinion about the best course of action.
You’ll need to do some legwork to find the best services in your area and work out which is the right fit for your situation. After all, no two people have exactly the same needs, so the best solution also varies from person to person.
3. Hospice Can Lengthen Life
There’s this strong fear that hospice kills people.
There may be situations where this happens, perhaps through an overdose of painkillers or hospice staff pressuring family members to stop a particular treatment (like providing oxygen).
However, such situations are rare. Hospice staff have a strong focus on respect and adhering to what the patient wants.
Hospice care can even have the opposite effect – extending life by an average of around 29 days. This is because the palliative care decreases stress on the body, allowing the patient to live a little longer.
That said, most people on hospice will die. This isn’t because the service is killing them, but because patients must be terminally ill to even be on hospice.
Also remember that death isn’t predictable. While it may seem like a loved one died early because of hospice, it’s impossible to know how long they would have lived without it.
4. Hospice at Home Can Be Wonderful or Awful
Hospice care can happen in facilities or in the home environment.
Hospice at home sounds better, as it keeps patients in familiar environments, close to their loved ones. Indeed, many seniors do want to die at home, rather than in a facility.
For some families, hospice at home is every bit as good as it sounds. It provides plenty of chances to connect and say goodbye. The hospice team may also provide practical and emotional support. This can be important for helping family members to cope with the death of a loved one.
In other cases, hospice at home quickly turns into a nightmare.
Part of the problem is that the hospice team doesn’t provide all the care. They often just visit a few times a week. There may be volunteers too, but a family caregiver is responsible for most of the work.
While respite care is available, this often isn’t enough to meet all the caregiver’s needs.
The differences in experiences make it important to do your research first. Find out what is likely in your situation and what will happen as your loved one’s disease progresses.
Also find out what happens if the home caregiver isn’t able to cope with their role. Is there a backup person or other options?
5. Getting a Hospice Referral Can Sometimes be Difficult
The improved comfort and reduced pain through hospice care makes it highly desirable. Yet, getting a referral can be tricky.
First, hospice is based on having six months or less to live. Seniors can’t be referred to hospice early, even if they’re in intense pain.
Even if seniors are sick enough for a hospice referral, you still need to actually get one.
This isn’t always easy. Some doctors lean towards optimism and take a ‘wait and see’ approach. Sometimes this is because they don’t want to give up on patients.
Yet, the pattern can leave seniors facing procedure after procedure, with quality of life declining throughout the process.
6. There’s a Shortage of Palliative Care Professionals
When you’re thinking about hospice, it helps to talk to experts.
After all, you don’t want to switch from potentially life-saving treatment to purely palliative care until you’re certain that your loved one won’t recover.
This is where things get tricky, as there aren’t enough palliative care professionals to go around. As such, it’s often difficult to find an expert when you need them, particularly if you need to decide quickly.
Finding palliative care experts really is important, because they know a lot about the medical industry and about quality of life. In contrast, doctors are experts in their field and often excel at extending life. However, they’re often minimally trained about when the quality of life cost of medical treatments is simply too high.
7. It’s Better to Enroll Early
One of the most significant issues with hospice is that most people enroll too late. They still get the services and support, of course, but they could have received these much earlier.
Other times people assume that you can only call hospice when the patient is at death’s door. But, in practice, patients are eligible for hospice a full six months before they are expected to die.
Reluctance often comes from the idea of not wanting to give in or admit defeat.
However, hospice isn’t really about giving up. It’s simply a change in focus – from trying to lengthen life to looking at the quality of life instead.
The improvements in quality of life and pain management often mean that people on hospice can do more than they could before, at least for a while. This gives them the chance to live their final months on their own terms.
8. Care Can Last for More Than Six Months
To be eligible for hospice, a patient needs to have a terminal illness and have six months or less to live. However, this doesn’t mean that hospice care automatically stops after six months.
After all, estimates of how long people will live can be incredibly imprecise.
Hospice care can continue as long as the hospice team and doctor verify that the condition is terminal.
9. Medicare Pays for Hospice, But Not Completely
Hospice services are often paid through Medicare (specifically the Medicare Hospice Benefit).
Medicare pays agencies a per day rate, regardless of the patient’s diagnosis or the amount of care they need.
However, the coverage isn’t complete. There’s a yearly upper limit on how much Medicare will pay. If the patient needs more support than Medicare offers, then they or their family members will need to pick up the tab.
Medicare funding is also limited to services that are associated with the patient’s terminal illness, plus related conditions. As such, there may be additional fees for services that aren’t directly related to the terminal illness.
Also, Medicare generally doesn’t cover room and board, except in the case of respite care. This isn’t an issue for patients who are supported at home. But, if the senior is in a nursing home or assisted living, someone will need to pay for room and board, along with any extra fees.
There are some other options for covering such costs, including charitable donations (some hospice organizations have these in place), Medicaid, and private insurance. Which options are available to you will depend on your loved one’s situation and needs.
10. You Can Leave Hospice
Hospice is end of life care. But, this doesn’t mean that people always die on hospice.
Human health is always complicated. Sometimes the body rallies or a disease goes into remission, so someone who was given just a few months to live may actually survive for years or even decades.
Patients aren’t trapped in hospice either.
They have the right to stop hospice and return to treatment for their conditions.
11. Hospice is Strongly Patient-Led
A common misconception is that hospice care will force patients to stop eating and drinking. This isn’t the case at all.
Hospice focuses on comfort and quality of life. Most patients continue to eat and drink, often enjoying their food.
The main exception is towards the very end, where some patients may decide to refuse food and drink, often because eating and drinking has become difficult. Doing so is the patient’s decision and not something they will ever be forced into.
How to Protect Yourself and Your Family
Hospice care can be powerful. In the right situation, it makes the end of life easier, improves pain management, and reduces stress for family members.
However, it’s critical to do your research.
Make sure that hospice is the right approach for your loved one’s situation, that you’re working with a good company, and that you’re informed every step of the way.
Part of doing so involves getting a second opinion (and a third!).
It’s worth getting alternative perspectives throughout the healthcare process. This includes talking to people with different specialties, such as doctors and palliative care specialists.
You may need to seek out people who are trained and willing to have palliative care conversations. Don’t wait for a physician to bring up the topic, as it is under-discussed.
It’s also important to talk with your loved one about how they want this time to go. This will give you the information you need to make good decisions on their behalf, in case they are no longer able to.
Need Support?
As a Death Doula, Angelica guides and supports families through the end-of-life experience, giving you an anchor and safe space every step of the way.
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