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So here we are at a crossroads. Your patient is dying and you have to have “The Talk.” Unfortunately, there are many misconceptions about hospice. Luckily, you can conquer the talk by understanding some common hospice myths and ways to overcome them.
I can’t tell you how many times I’ve been the one having this discussion with my patients. Usually it’s after the doctor has left the room and now they want to make a hospice referral. However, there’s just one tiny missing fact, the doctor asks me to tell the family.
If you’ve ever found yourself in this position, I can help.
However, to do this, you will need to understand hospice myths and ways to overcome them.
First off, let’s be honest, you did not sign up for the talk and OMG there are like 20 family members in the room. They’re throwing around phrases like “we are going to fight this” and “we are not going to give up.”
Not to mention that the doctor has offered yet another clinical trial if one becomes available. Rabbits are flying out of the hat and hope wins the day! (Sorry about that. I just had a flashback.)
Hospice Fact vs. Fiction
While hospice remains one of the most comprehensive benefits available to Medicare patients, many still do not use it. According to the 2020 facts and figures report published by National Hospice and Palliative Care Organization (NHPCO) just about 50% of eligible patients utilized the hospice benefit.
To be clear, 50% is low folks!!! To put it another way, half all of the hospice eligible patients are not receiving hospice care.
Worse yet, the average length of stay for hospice patients was less than two weeks. (SAD!!!)
So, let’s put it into perspective.
When patients die in ICU or hospital settings, they have increased emotional distress and decreased quality of life. To make matters worse, research shows that their caregivers are more likely to develop psychiatric illnesses.
Unfortunately, patients have so many misconceptions about hospice that it can feel like climbing Mt. St. Helen’s (which I have never done by the way) to get beyond first base.
Another interesting fact is that cancer patients on hospice out live those who are not.
Well, I hope I have your attention.
Now that I am done spouting facts, we can move on to the reason you are here. You want to understand common hospice myths and how you can overcome them as a nurse.
Hospice Myths Explained
To start, let’s take a look at some of the common hospice myths and ways that you can overcome them. Honestly, if you work in healthcare, there is a good chance that you received little training in end-of-life discussions.
I’m not knocking your education, but sometimes I just have to keep it real. And this one of those times.
Myth #1
Hospice care is expensive.
I have heard this so often and it can be confusing. You should keep in mind that patients and families may have been paying privately for caregivers for some time already. So, they don’t understand that some of those services are actually covered by hospice.
Fortunately, when patients elect hospice many of the items they need will now be covered by Medicare or their insurance. For instance, the benefit pays for durable medical equipment aka DME. In many cases this includes oxygen, wheelchairs, and even a hospital bed.
Additionally, it ensures access to nurses, home health aides, social workers, chaplains, and hospice volunteers.
NOTE: Even if patient is uninsured, the hospice may have a charity program to assist with care needs.
Myth #2
Hospice is for cancer patients.
When I worked inpatient oncology, I figured cancer was the largest population of patients on hospice. Honestly, when I worked inpatient oncology, we saw the sickest patients. It was hard to imagine that a vast number of patients survive their battle with cancer.
Honestly, we lost so many patients each year that we started hosting an annual remembrance event. This event was a great way to help staff and families reconnect after their losses.
While cancer patients makeup a significant number of patients enrolled in hospice, > 60% of patients had a diagnosis other than hospice. Alzheimer’s dementia, heart disease, kidney failure, and stroke are also common diagnoses admitted to hospice.
In order to overcome this concern, help make sure you understand the types of patients that are appropriate for hospice. Hospice eligibility is a topic that I cover in great detail and it is quite simple once you understand the basics.
Essentially, any patient who has been given a prognosis of six months or less if their disease runs its normal course could be eligible for hospice.
Myth #3
Hospice means no hope.
This one breaks my heart!
I used to hear physicians that they did not want to take away the patient’s hope. Especially, when they have had a long relationship with the patient.
This is where the lines can get blurry!
Personally, I completely understand this idea of hope. But even a dying patient has hope. It may just be that the focus of that hope shifts. Still, we have to discuss hospice and focus on new hope.
For instance, maybe the patient hopes to be pain free or they hope that their family is coping ok. Hospice can be so many things. It’s a shame that providers shy away from “THE TALK” because they fear taking away hope. It’s so important that you learn better words to say when talking to your dying patients.
Myth #4
Hospice is for the last days of life.
Well, I don’t think this one is going away any time soon! Especially given the number of late referrals to hospice.
I can’t tell you how many times I’ve heard providers say “they’re not ready for hospice.” (Makes me so frustrated!)
Don’t get me wrong. I know that sometimes patients don’t want to talk about dying. I get it. However, it is your job to help them understand the benefits and facts about hospice.
In many instances, when asked about their experience with hospice, most patients and families say they REGRET not having hospice sooner.
One of the best ways to overcome this and other objections is to get training and education on better words to use when talking to patients about hospice. There are great courses available and websites dedicated to improving hospice dialogue. I especially like the Conversation Project kits and workbooks.
Myth #5
Patients need a doctor’s referral to speak to hospice.
This is simply not true. On the contrary, anyone can call and ask for a hospice referral. To be clear, a nurse, a patient, the family, or a friend can contact a hospice agency an informational visit to discuss hospice and what services include.
As a result of this visit, the hospice can evaluate if the patient is appropriate for hospice. If you ask me, it sounds simple enough!
What happens if the wants hospice?
Again, if the family want to talk about hospice they can. So, if the patient hears what the hospice team has to say, then they can elect to enroll in hospice. Once the patient agree, the nurse can call and get the order from the doctor.
In my experience, doctors have been known to give push back if they did not make the referral. However, it is fully within the patients right to reach out to hospice. Personally, I think it is far less scary for the patient and family when they have a voice.
Remember, we (nurses) are patient advocates. And this is one way to advocate for the patient.
Myth #6
It is too late to call hospice.
Sadly, I’ve seen too many patients referred to hospice when they are imminently dying. Let me stress again the importance of referring sooner rather than later.
Thankfully, hospice care DOES NOT end when the patient dies.
After being a hospice nurse for many years, I am a firm believer that hospice is just as much about helping the family as it is helping the patient. Once a patient passes away, hospice offers 13 months of bereavement care.
There is no other medical service that covers families in the way that hospice bereavement does. Bereavement visits may include a nurse having a cup of coffee with the family or a chaplain stopping by to sit and chat.
In many instances, caregivers are grieving and could use the support once things settle down.
This is where hospice can help.
Myth #7
Nursing home (NH) patients don’t need hospice.
Pure blasphemy!!!! This hospice myth couldn’t be farther from the truth.
I am begging you to understand that NH staff are just like the rest of us. Overworked and underpaid.
For instance, when I worked in the nursing home as an LPN (many moons ago), I easily had as many as 28 patients on my unit with one aide. Talk about just trying to stay afloat…
Honestly, it was not very realistic to think that I would have extra time to go and sit with a dying patient. Worse yet, it was difficult to monitor pain and symptoms when I was busy pushing meds and changing dressings. It is a reality. I am not hating on my NH colleagues. In fact, I applaud them for their dedication and compassion.
So, what can you do?
First, explain that the hospice team can help supplement the care that the NH is providing. Secondly, the patient can have a hospice nurse assistants to provide perks for the patient. For instance, they can sit outside with the patient. Or they can have a spa day. I used to work with an aide that put a special note on the bedside table for the family after each visit.
This was a big hit. And after all, it really is the small things that mean the most.
One other point, most hospice nurses have received special training on pain and symptom management. So they have specialized training in end-of-life care. When hospice provides care in the NH, it is a partnership. When done correctly, not only is family be happier, but the facility is as well.
Myth #8
If I go on hospice, I can’t change my mind.
Some hospice myths such as this one can be a hard stop for patients.
It is simply not true. Patients have the right to sign off of hospice at any time. I have seen patients who want hospice but later learn that a new cancer treatment has become available and they want to try.
I have also seen patients that have lived beyond 6 months and decide that they want to come off hospice because they get better. It’s a strange thing but people actually get better and “graduate” from hospice. This is typically time to celebrate for the hospice and the family. It is amazing how deprescribing and additional socialization can increase the will of the human spirit.
You can help you patients by explaining that hospice they can revoke their hospice enrollment if needed. This is their choice!
Myth #9
Hospice stops all medications.
What can I say. This hospice myth used to be somewhat true. Fortunately, things have changed. Hospice care has come a long way. It is more likely the case that medication such as chemotherapy will be discontinued. Now days, patients receive antibiotics and other meds to manage their symptoms.
Amazingly though, when medication regimens are simplified, patient often feel better.
Myth #10
Patients have to give up their doctors once on hospice.
The patient has the right to keep their physician. According to Medicare the patient has the right to select their attending physician to follow their care. Some physicians may choose to turn over pain and symptom management to the hospice medical director. But the primary care physician knows the patient’s history and may be able to help with medication adjustments for the patients’ other diseases.
This includes managing chronic conditions such as diabetes, heart failure, or other co-morbidities.
Conclusion
In closing, don’t let these common myths and objections that you may hear keep you from talking to your patients about hospice. The more you can education yourself, the better advocate you can be for your patients and families.
My hope is that the we get patient to the right level of care sooner.
Feel free to leave me comments and let me know what other topics you want to hear more about.
Are there other hospice myths that you would like to know how to overcome? Leave a comment below.
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