The Difference Between Hospice and Palliative Care
Most people are able to go through life with a very basic understanding of how the healthcare system works. You get sick, you go to a clinic, you see a doctor and a nurse, the pharmacist gives you the drugs, you go home. Your understanding of things beyond this point may be helped if you love a good medical drama but nothing prepares you for the moment when things get real. Taking care of your parents is one of these moments.
One of the areas that is the most difficult to understand is the language of healthcare. When you’re suddenly taking care of someone else its like you need a translator app to decipher all the lingo and there’s no little green owl to help you out. This article is part of a series to help demystify some of the words and concepts you’ll encounter as you take care of your aging parents.
Today we’re going to cover: "hospice care" and "palliative care." Both can seem similar on the surface, yet they have distinct differences that can significantly impact the care of your parents. Also, hope you like British humor because we’re leaning heavy on Monty Python today.
What Are Hospice and Palliative Care?
Before diving into the nuances, let’s break down what hospice and palliative care actually are. Both are approaches to care centered around providing comfort and support, but they cater to different stages and needs of a patient’s life journey.
Hospice Care
Hospice is not the sixth Spice Girl. It’s an approach to healthcare that is focused on providing quality of life when a cure is no longer an option. This could be because you’ve tried all the possible treatments and none of them have had a real impact, or when the risks of continued treatment outweigh the benefits. When a patient shifts to hospice care (aka “going on hospice”) the healthcare team stops trying to cure the disease and shifts all their efforts to pain relief, symptom management, and honestly, just trying to make someone feel a little less awful while they’re dying. Typically, hospice care is provided when a patient is expected to live six months or less.
Palliative Care
If Palliative care was a Spice Girl it would be “Comfy Spice.” She’d be on stage but she wouldn’t dance or sing. Her main role would be to support the rest of the group so they can perform at their best. No high heels, no jumping around, just a soft blanket, some tea, and maybe a nice foot rub after the show.
Unlike hospice, palliative care supports patients at any stage of a serious illness. It can be provided while a patient is still receiving treatment and focuses on improving the quality of life by managing symptoms and providing emotional support. This is where a lot of people get tripped up. It’s focusing on a lot of the same things as hospice but it’s not limited to end-of-life care and can be integrated at any point in the illness trajectory.
You might be thinking, “So wait. Isn’t the doctor already working on pain relief and managing symptoms?” The answer is yes, but that’s not their main focus. Most doctors focus on curing the disease first and if they can minimize the side effects of that disease or treatment along the way, great. A palliative doctor is a specialist that only focuses on the symptoms. This expertise can be a game-changer for people living with chronic disease.
Key Differences: Hospice vs. Palliative Care
Understanding the differences between hospice and palliative care can help you make informed decisions for your loved one. Here’s a breakdown of the primary distinctions:
Timing and Goals
Hospice Care: Focuses on patients at the end of their life. The goal is comfort and quality of life without pursuing curative treatments.
Palliative Care: Available at any stage of a serious illness. It works in conjunction with curative treatments, focusing on symptom relief and overall well-being.
Eligibility and Setting
Hospice Care: Requires a terminal diagnosis with a prognosis of six months or less. Care is often provided at home, in a hospice center, or a specialized facility.
Palliative Care: No specific prognosis is required though some home-based palliative care programs only work with specific diseases. It can be offered in hospitals, outpatient clinics, or at home, depending on the patient’s needs.
Insurance and Costs
Hospice Care: Usually covered by Medicare, Medicaid, and most private insurance plans. Coverage often includes medical equipment, medications, and other support services.
Palliative Care: Coverage can vary. Medicare and Medicaid may cover some aspects, but it often depends on the insurance plan and specific services provided. Again, your health plan may have rules about which diseases qualify for palliative and where you receive it.
The Emotional and Psychological Aspects
Choosing between hospice and palliative care is not just a clinical decision; it’s a deeply emotional one that affects the whole family. You’re not just picking a treatment plan, you’re signing up for some feelings you didn’t even know you had. Let’s explore how these care options address the emotional and psychological needs of you and your parents.
Emotional Support in Hospice Care
Counseling? Check. Support groups? Check. It's like, “Hey, we know this sucks so let’s talk about it.” The hospice team are basically the emotional life coaches you didn’t know you needed, but you definitely do. They’re going to focus on helping everyone, you and your parents, cope with the emotional challenges of end-of-life care. They are experts in guiding you all through the process of dying. As you might expect, it can get complicated: from understanding what’s normal and what to expect, to being able to identify things in advance that will make everyone’s life easier.
Psychological Support in Palliative Care
On the other hand, mental health care in the palliative world is like bringing in team of sports psychologists to make sure that everyone’s got the right mindset for the big game. This team can include psychologists, social workers, and sometimes spiritual advisors. It’s about treating the whole person, not just the illness because living with a chronic disease is rough and we all need help making sense of it.
If You Have to Make the Choice: Hospice versus Palliative Care
The decision between hospice and palliative care is deeply personal and depends on the specific needs and circumstances of your parent. Sometimes it’s straight forward because your parent has more than six months to live or they’ve told you exactly what they want. Maybe it’s as simple as, “Yo, I’ve lived a good life. I’m ready.”
Other times it’s more complicated. There are a lot of familial and cultural feelings about death and the healthcare system in general that make the decision to go on hospice really difficult. It's also common for a doctor to say some version of, “I think the risks outweigh the benefits of continued treatment but its up to you. We can stop treatment and shift to hospice, or we can continue treatment and go on palliative care.”
Yikes. Here are some tips to help you make an informed choice:
Assess their Needs
Consider the stage of the illness and the level of care required. If your parent is up for continuing treatment, palliative care might be the best option. If the thought of another round of chemo or surgery is out of the question, hospice might make more sense.
Involve Healthcare Professionals
Try to get as much information from the doctors as possible. Ask questions like, “What are all of the treatment options at this point?” and, “What are the risks of continued treatment?” Consult with your parent’s healthcare team to understand the options and get recommendations. Involve your parents in the conversations if you can. Really what it comes down to often is what are your parent’s goals when it come to their of quality of life. The medical team can give you some important information about how much extra time continued treatment will provide and what the likely side effects will be. For some people this extra time is worth the discomfort but for others it may not be worth it.
Consider the Emotional Impact
It’s very easy to get all heady and technical about decisions like this. Some of us try to force logic on inherently illogical situations as a way to cope. It’s important though to consider the emotional and psychological impact of each option as well as the potential support they provide. For some people choosing hospice means “giving up” and for others it means “accepting reality.” There is no easy way through this. Choose the approach that aligns with your parent’s values and the family’s needs.
Wrap Up: So Now What?
There’s no way around it: this is uncomfortable territory. Hopefully understanding the difference between hospice and palliative care will help you make the best decision for your parent if you have to choose.
So, whether you’re preparing for the final chapter or seeking support in the midst of a challenging journey, know that you have options and resources to guide you at every step of the way. Reach out, ask questions, and most importantly, make sure you know what your favorite color is: