When Is It Time? Understanding the Qualifications for Hospice

"Approaches to death and dying reveal much of the attitude of society as whole to the individuals who compose it. The development of the ideas of what constitutes a good death can be traced to prehistory."

-Dame Cicely Saunders (Founder of the first hospice)

Families are often not ready to talk about or even consider hospice. One of the most common things I have seen in families is waiting. Waiting for further decline, waiting for the doctor to bring up the topic, waiting for a "clear sign" that it's time. In the meantime, loved ones, or the individual, often find themselves frantically trying to reverse the process by pursuing all treatments possible. This is human nature. When humans face difficult times, we cope by denying the situation. We will do everything in our power to make the reality not true. That's okay. While hesitation is human, it is also shaped by a system that profits from doing everything to prolong life and not so much to sustain and support the quality of that life.

So, we drag ourselves, or our loved one, to the next appointment. To more test. To meet more specialist. Next appointment. More test. You get the picture. But when is enough, enough? Despite the person feeling fatigued, they still attempt to keep going. Though the body is saying, "We can't do this anymore." We still keep going. This is part of our denial, but is also due to the culture we live in. Have you ever heard someone say, "You can rest when you are dead." Despite losing the last bit of quality of life, we keep trudging along in hopes something will change until one day; we just can't anymore. We raise our white flag up, but by then, we have already suffered too much. Exhausted all of our energy.

There's also a culture hush around the word "hospice." It's rarely spoken about openly. As someone put it to me once, people say, "They are on hospice," in a whisper voice. As if it were something to be shameful about or a taboo subject. This whispering reveals a discomfort and shines a light on the gap in knowledge about hospice. All of this contributes to the delay in receiving the full benefits from hospice that could help make the end-of-life process more peaceful and empowered.

This blog is here to shed some light on what qualifies someone for hospice, to clear up some common misconceptions, and to help you recognize when it might be time to consider hospice-so you don't end up waiting until it's too late.

The one thing I ask of you, is to reframe the idea of hospice.

You aren't giving up or failing because you have considered hospice.

Instead, you are choosing hospice for support. To preserve quality of life. To make the most of the time you have. To allow yourselves to grieve fully.

What is Hospice?

Let's begin by taking you back in time, to where it all began. Believe it or not, but hospice was not a thing until recent years. It wasn't until the 1960s, when the modern hospice movement began in the UK thanks to our man, Dame Cicely Saunders. It was believed, during this time, that dying is a natural part of life and should be approached with dignity and support. Hospice is a philosophy of care. It centers on comfort over cure and focuses on improving quality of life for those with terminal illnesses. The U.S jumped on board with hospice during the 1980s and is now covered through Medicare, Medicaid, and most private insurance plans.

Now that we understand the philosophy of hospice and where it came from, I want to knock out some common misconceptions of hospice. Due to hospice leaning more towards improving quality of life rather than prolonging life, people often believe hospice is a "death sentence" or is considered to be "giving up." While it may seem this way, it is far from truth. By the time someone qualifies for hospice, their body is already showing signs that the decline will continue to progress. Once the body has gone beyond a point of no return, it's very difficult to stop the direction it is going. By this point, people are faced with two decisions- to keep fighting or to surrender. We then must ask, what's important to us? Fighting or making the most out of the time we have? In truth, some people feel better once they enter hospice because they are finally supported physically, emotionally, and spiritually. This doesn't just go for the individual, but for loved ones too. It has been stated that people live longer than expected when they are on hospice because the stress is being taken out. Of course, there is some stress, but not as much as there would be if the individuals or loved ones were managing transitional times on their own with uncertainty and no clear direction of how to manage.

When you get on hospice, you aren't signing up to stop treatment or to end your life, or your loved one's life. In fact, you are more than welcome to go see your physician as you would. You just aren't able to see your specialists because that's considered in hospice as "aggressive treatment". Same with special treatments like chemo, radiation, or dialysis. Hospice understands you have built a relationship with a physician, and you want to continue using them. Some people will sign up for the hospice medical director and cancel their original physician. We will go over the medical director's role later. You don't have to stop all your medications, that's not what hospice is about. Instead, hospice will review your medications with the medical directors to deem out what's necessary and what's not. I know, who is hospice to deem what is necessary and what is not? Truth be told, they can't force you to stop, only educate you. This is where those long discussions happen between hospice, families, and individuals take place. I have had countless discussions about how taking 27 supplements/vitamins is not truly benefiting a person anymore. As we age, our body no longer absorbs those as they did before. Sometimes, they can do more harm than good because they are overloading the kidneys. Hospice's goal is to shift the perspective to improving quality of life. Truth be told, I have had many patients tell me they hate having to take 30+ pills per day and wish they didn't have to. They don't see a point in it. Some people just want to stop it all, and that's okay too. That's another difficult conversation to have because that's when people feel like hospice is "killing" their loved one, but that's not the truth. Hospice is about empowering people to make the choices. If not taking your pills is what's going to make you happy, then that's that. Of course, hospice is going to educate you on why you should continue your important medications. The last thing they want is for people to end up in the hospital. Their goal is to minimize ER visits, and to keep you out of there. The ER isn't a fun place to be. The ER was not a fun place to work, so I am sure it's not a fun place to be!

When I say "hospice", it's not just hospice as a whole, but the individuals that make up hospice. When you sign up for hospice, you get a whole team too. Hospice provides a well-rounded team. You know how some people say, "it takes whole a village to raise a child?" Well, it takes a whole team to provide the best end-of-life support and care. It's not just the individual who is on hospice that is just getting the support, but it's also the family. This requires an entire team to get the job done well. The hospice team includes:

• Registered Nurses or Licensed Practical Nurses:

  • The RNs can be the case manager who oversees a caseload of individuals and manages their care.

  • The RNs can also be individuals who help make visits when the case manager isn't able to. Same with LPNs.

• Home Health Aides or Certified Nursing Assistants:

  • The nurse's eyes and ears. These guys are amazing at what they do. They help report things that are also going when the nurses are not there.

  • They provide bathing, dressing, and feeding assistance.

  • They also provide social visits.

• Social Workers

  • Provide psychosocial support

  • Connect families to resources

  • Help find new living situations

• Chaplains

  • Provide spiritual support

• Volunteers

  • Help improve quality of life

  • Provide social visits

• Medical Director

  • Provides medical guidance

  • Writes orders for treatments or medications

  • Helps determine if someone is still appropriate for hospice

  As you can see, you get a whole team to help guide your through transitional times, so you don't have to do this alone. But the question remains-who qualifies for hospice and what are the benefits?

Who Qualifies for Hospice and Why Timing Matters

One of the most misunderstood parts of hospice is who actually qualifies and when to begin. Many families, and individuals, wait too long. Either unsure of the criteria, not knowing they meet criteria, or holding on to hope for recovery. As I have mentioned, hospice is not about giving up-it's about ensuring comfort, dignity, and clarity in a time when every moment matters. So, who qualifies and what are the qualifications for hospice?

In the first section, I mentioned that insurance now covers hospice. Insurance plays a huge role in setting criteria for hospice qualifications. To qualify for hospice under Medicare (and most private insurers), a person must have the following:

• Have a terminal illness with a life expectancy of 6 months or less to live, if the disease follows its normal course. This diagnosis is given by the physician based on clinical data they have on file for you. This clinical data essentially is a case that shows you are showing signs of decline that insurance is looking for. This clinical data will show significant changes in a short time (typically over a year or six months) and can include:

  • Significant amount of weight loss, that is unintentional.

  • Increased infections. These infections can include UTIs, Pneumonia, or other types of infections.

  • Increased falls

  • Increased ER visits

  • Functional and physical decline. This can be loss of physical mobility, increased sleeping, decreased appetite, progression of illness through labs or imaging, and/or cognitive decline.

Now that we have briefly gone over some key qualifications for hospice, we have to go over needing a primary diagnosis for hospice. What this means, is despite you showing the above criteria, hospice needs a reason as to why you are showing these symptoms. People often think hospice is only for those with a cancer diagnosis, but it covers a wide range of terminal illnesses. These may include, but not all:

• Heart diseases (like congestive heart failure)

• COPD and other lung related conditions

• Dementia and Alzheimer's

• Kidney or liver failure

• Stroke-related decline

• ALS or other neurological conditions

• Cancer

Each one of these also comes with their own specific functional and physical benchmarks, but I won't go into that. If you are checking for mostly all the criteria above, or your loved one is, it may be a time to ask the provider about hospice.

So why does timing make all the difference? People often wait until the very end to call hospice-sometimes just days before or even hours before someone passes. Why?

Because no one wants to feel like they're throwing in the towel too soon. Because they worry it'll mean no more help. Because there's so much emotion tied to the word "hospice". Again, this is all normal. The goal here is give you all a better understanding of what hospice is and why it can be beneficial.

The truth is that early referral brings peace. More time for visits. More chances to manage symptoms. More space for meaningful connection. More support for caregivers. And, as studies show, potentially longer life. I have had many people graduate off of hospice. Yes, graduate. Meaning they reached a point of stability because hospice was able to maintain their overall health. We didn't fix the problem, but we helped manage it effectively. This isn't to say that the person was cured.

Hospice isn't just about emotional, spiritual, and medical support. Hospice is about pitching in where the stress is high. Of course, the three areas listed can be areas of high stress, but there are other areas we often don't think about, such as financial. I am not saying hospice is going to cover all the cost, but they do help cover a lot. This includes:

• Medications related to the terminal diagnosis and medications that are for comfort

• Medical equipment such as hospital beds, oxygen, wheelchairs, and more

• In-home visits by the team: nursing, social worker, chaplain, aides, and others

• respite care for family caregivers

• 24/7 on-call support

This means people are able to stay in their homes longer, or the entire time! Aging in place is becoming very popular these days, meaning people are staying home and having care come to them. With hospice, people can avoid constant ER visits by having care come to them if needed. This doesn't mean hospice becomes 24/7 care, but it does mean they can be on hand when you need them.

Now, as a registered nurse with hospice case management background, I will be honest with you. Hospice has their hands full, not to say that you don't matter. Each role is being pulled in many directions at different times. As their census grows, their time with individuals and their families becomes limited. This is what led me to what I do today.

Hospice vs. Registered Nurse Death Doula: How We Make a Wonderful PB&J Sandwich

It's easy to assume that if someone is on hospice, all their needs are met. But in truth, hospice teams are often stretched thin, and visits are short - sometimes just once a week or less. Regulations require a nurse to visit every 2 weeks. This is where a Death Doula comes in, not to replace hospice, but to fill in the gaps and deepen the emotional, spiritual, and practical care that families truly need. Also, I have been stating that many people are just not there or ready to call hospice. I often come before hospice joins the picture. I am here to help bridge the gap and to help get everyone ready for when that time comes. Even if people decide to wait until the final moment to call hospice, I am able to manage care since I am a registered nurse. The two together, hospice and death doulas, complement each other well. Like PB and Jelly. We complete the sandwich, which represents end-of-life care and support.

We both provide end-of-life care and support. Hospice has a whole team. I am just by myself, but I don't oversee an 18+ caseload of individuals. This means I able to:

• Extend presence and companionships. I get to be with individuals and their families for longer times. I also get to sit at bedside when individuals are passing (most hospices do not provide vigil services)

• Emotional and spiritual support tailored to the individual and family.

• Legacy work, ceremonies, rituals for those wanting a deeper experience

• Guidance, planning, and helping navigate choices with clarity.

• Pitch in when caregivers need a day off or extra help

• Funeral planning

Death Doulas do not provide medical care, but I do! I get to blend medical care with my Death Doula practice. I like to say that I am your personal assistant for death. If you aren't at that point, I say I am your party planner for death. Death is a heavy subject, but I try to find the beauty in it. Though it seems out of the norm, it's something I have learned to find peace in. It is the area that is my calling. Through this calling, I have been able to bring comfort and ease to something that is very difficult. Believe it or not, I get people laughing during one of the most difficult times. Death is sad. Earth shattering even. Despite this, I am able to remind people that the life that is about to depart, brought many memories. Through those memories we are able to laugh, joke, and find peace.

The last sense to go, as you are passing, is your hearing. Imagine you are passing, and you hear a room full of those you love laughing. Ask yourself if this would bring you closure? Peace? Would you be scared or comfortable?

Final Thoughts: Start the Conversation Now

We have covered a lot. From what hospice really is, to who qualifies, why timing matters, and how Death Doulas can offer presence where they system falls short. But all that of this comes down to one thing:

Support

It's not just about getting help when things are falling apart quickly. It's about recognizing the signs early, having the right conversations, and giving yourself - and your loved ones- a chance to navigate this with clarity, dignity, and peace.

So, take a moment and really think:

• Is someone I love already meeting criteria for hospice?

• Have we had these conversations yet - or are we waiting?

If you are not ready for hospice, that's okay too.

There's still space for support. You don't have to face it all alone. You can always invite me to help you prepare, talk, or just to be present.

Share this with someone you love or simply reach out - I'm here.