Palliative versus Hospice

What's the difference?

First, I need to acknowledge that when I am talking about palliative and hospice it’s coming from the perspective of the US healthcare system. The definition, rules, and regulations can vary based on your country of residence.

Hospice and palliative medicine have a bit of a reputation and are often horribly misunderstood and misrepresented. This confusion creates unnecessary fears and creates unnecessary barriers to not only high quality care but access to standard of care. Understanding the definitions, differences, and nuances between the two will hopefully reduce the stigmas and fears associated with them so you or a loved one can get all the care you deserve. People who work in hospice or palliative care are not spooky grim reapers who want you to die. We are just people who want you to live your best life regardless of how much time you have left.

The truth is that hospice and palliative care are similar but distinct from each other. Yes, you have to have a serious illness such as cancer, heart failure, dementia, ALS, liver failure, etc. Yes, the board certification for physicians is “hospice and palliative medicine” and many providers and agencies offer both services. No, it’s not just for those who are dying and giving up. Hospice and palliative are similar but NOT synonymous which means they are are used at different points during serious illness.

Palliative care is a medical specialty just like cardiology or neurology but we don’t focus on a single organ or disease. Palliative care is supportive care for anyone with serious illness, at any age, any stage, and is not tied to life expectancy or treatments you are pursuing. Palliative care providers are basically the “quality of life” specialists. Palliative care is given in addition to either curative or life prolonging treatment. What does that look like? We are experts in helping you live your best live on your terms. We do that in several ways:

• Symptom management. Yes you will probably have bothersome symptoms but you don’t have suffer unnecessarily. We have so many tools to reduce your symptom burden.

  • What symptoms are normal and expected?

  • What and when do symptoms become worrisome?

  • How do we reduce symptoms so you can still live your life?

• Understanding the nuances of your disease process:

  • What is expected course of your disease? You are the expert of your body, but you need to understand how your body will change throughout the disease course and its treatment.

  • What are your treatment options? What does that mean or look like, specifically, for you?

  • How and when you might expect to make changes to your plan of care with your care team?

• Figuring out what is most important to you so we can build a care plan that not only works for you but preserves the important aspects of your life.

• Providing both practical and emotional support for the patient and family.

• Navigating the complexities of the medical system and making sure all your various specialists are talking to each other so they are on the same page.

• Advance care planning (health care power of attorney or formalized “DNR” forms such as POLST/POST/MOST)

• Guiding through the complexities when either your disease course changes or your goals change.

Those are just a few concrete ways that palliative care can help you navigate a serious illness. The key takeaway is that it is along side any treatments you’re getting. Yes, we can help transition to end of life care but you don’t have to give up any life prolong or curative care to get palliative care. You can use, or not use, palliative care for as long as you need it. It’s standard of care for any serious illness. It doesn’t mean you’re dying, are weak, or are giving up. In fact, palliative care can improve both the quality and length of life of someone with a serious illness.

Hospice care is an insurance benefit for end of life medical care that is focused on wrap around support providing comfort and dignity through symptom management, emotional and spiritual support, and allowing the illness to run its natural course. Since it is an insurance benefit, it is strictly regulated and must meet eligibility requirements. You must have both a terminal diagnosis and a life expectancy of six months or less if your illness were to run its natural course. Hospice differs from palliative care in two key ways - 1. it’s prognosis based, so you have to at the last six months of your disease course and 2. you are no longer getting life prolonging treatments (e.g. chemo). There are some major differences in what hospice will provide for pediatrics versus adults but that is outside of the scope of this article.

I need to be clear, hospice is NOT giving up or hastening your death. Often times, aggressive treatments for a disease may hasten your death when conservative, symptom based medical management (hospice) may actually prolong your life. The hospice philosophy isn’t about doping someone up so they die faster. It’s about promoting a persons quality of life and dignity for whatever time they may have left.

Sometimes, the symptom burden may require increases in medications to reduce suffering. But the goal isn’t to make you die, it’s to make you more comfortable. We only treat or increase doses when symptoms are bothersome to the patient. How much someone is bothered by a particular symptom varies from person to person. How much someone is willing to endure a symptom can come at a cost of their comfort. Likewise, there might become a tradeoff where better symptom control comes more important and comes at the cost of how alert a some one is at the end of life. The goal should always be the lowest dose to achieve adequate symptom relief. But this is why it is important for you, your family, and your care team to understand your goals and values. Without a deep understanding and respect of what is important, acceptable, and not acceptable to you at the end of life, your end of life wishes may not be honored. You only get one chance to die, so make sure you talk about it so the care you get reflects your wishes.

This is just a brief overview to compare and contrast palliative care from hospice care. There are a lot more things I could ramble on about. But the key difference is palliative care is standard of care that is given alongside any curative or life prolonging treatment regardless of your life expectancy. Whereas hospice care is standard of care for end of life and is prognosis based.

Both palliative and hospice are standard of care for anyone with serious illness. You certainly don’t have to use either palliative or hospice care if you have a serious or life limiting illness. Just like you don’t have to see a primary care doctor, a cardiologist, or any other specialist for that matter. But if you want better symptom management or extra support when you’re dealing with a serious illness, it’s worth asking for and trying.