“When do I get my shot?” She laid in the bed, unable to move her own limbs, and in excruciating pain as we assessed her condition and discussed our priorities. Pain management was at the top of the list. “Soon, dear. We’ll get you something very soon.” We were sure that the “shot” she was talking about had everything to do with her pain. She wanted some relief, and we quickly got the orders in place and medication administered. But, as the evening progressed and her medication began to work, she still asked, “When will you give me the shot?” We needed some clarity, and she was more than willing to provide it. She believed that we had come to euthanize her. She thought we had a syringe of medication that would put her to sleep peacefully and her life, which she felt was not much of a life at all anymore, would finally end. No more suffering. No more pain. The look on her face when we cleared up the misunderstanding was one of pure disappointment and sorrow. I almost felt badly that I couldn’t fulfill her request, but it just wasn’t an option.
Hospice is widely misunderstood, an unfortunate circumstance that results in many patients never receiving a service that is totally covered by Medicare for them. According to NHPCO, only 1.5% of Medicare beneficiaries actually received their Hospice benefit in 2018, while 2.3% of all beneficiaries actually died that year. That’s a difference of about a million people. That’s 1,000,000 or more people that may have died in pain, or spent their last days connected to ventilators and IV’s in a hospital bed. That’s 1,000,000 people who could have enjoyed the benefit of having experts to keep a watchful eye and ensure that their passing was peaceful. Sadly, this figure is most likely (at least in part) due to the misconceptions surrounding Hospice care.
Let’s break down some of these false ideas:
People often believe that Hospice staff kill their patients. I cannot stress this enough…Hospice is NOT designed as a euthanasia service, and the physicians and nurses who work in the field are held by the same standards as those in other fields. We are to do no harm to the patient, utilize the least invasive options first, and are not permitted to give patients more medication than is ordered by the doctor. It just simply is not true. In fact, even in states that have adopted Death with Dignity laws, allowing physicians to prescribe life-ending medications for terminal patients, nurses are not permitted to administer the medication itself. Nurses are permitted to support the patient throughout the process, but the patient must make the decision themselves to take the pills, and they must self-administer them as well. This is not an option in all states, and even in the states that do offer this option, many physicians and nurses will decline to participate or be involved in any way based on ethical grounds.
While cancer patients can benefit greatly from Hospice service, they are definitely not alone. In fact, according to CMS, cancer is no longer the most common Hospice diagnosis, being surpassed by neurologically based diagnoses such as Alzheimer’s disease and other dementias. As the medical industry works to further treatment options for cancer patients, therefore increasing their success rates, we may continue to see that drop. But, other diseases remain incurable and will work their way to the top. The point here is that Hospice care is available to anyone with a terminal diagnosis. While cancer patients do qualify, Hospice is also available to those with lung, heart, liver, brain, and even bowel diseases.
The idea that Hospice comes in when a person has given up on life is simply not true. While Hospice is often recommended by physicians after all other medical options for treatment have been exhausted, it does not mean that the patient has “given up” on their life if they take the recommendation. I’ve seen so many patients go from exhausted, frustrated and sickly as they have endured months or years of invasive treatments, to happy and vibrant as they receive our services. Suddenly, their life revolves around family, hobbies and interests rather than appointments and treatments. Suddenly, they are free to live without pain. Suddenly, they can get the rest they need and save their energy for things that give them joy! Furthermore, I’ve seen patients regain such strength and wellness that some have actually been able to qualify for treatments and been able to reverse their plan of care.
Hospice is often mistaken as a last and final decision, irreversible and permanent. Hospice is a service, just like home healthcare and physical therapy, and just like those other services, you can opt to start or stop whenever you please. While you may be going against medical advice, advice is just advice. You ALWAYS have the option to change your mind. If you feel that your particular hospice company is not providing what you need, you can switch to another or simply revocate from Hospice all together. The decision is never final.
A Do Not Resuscitate order, otherwise known as a DNR, is a physician’s order, requested by the patient that states that if a patient were to die, the staff should not perform CPR (chest compressions) in order to try to revive them. Depending on your state, the DNR order can contain other information as well or can be written in conjunction with other orders. Since CPR is rarely successful at bringing a person back to life long enough for them to be discharged from the hospital, can cause serious damage such as broken bones, and often leads to intubation and ventilation, it is recommended to patients who are expected to die, to consider signing a DNR. However, if a person wishes to remain a FULL CODE, which means that all attempts should be made to revive them when they pass, they may remain on Hospice. They’re treatment on Hospice will remain the same regardless of their decision and when they pass, CPR will be performed, and they will likely be transferred to the nearest Hospital for further care.
If you’re considering Hospice care for yourself or someone you care for, and are having concerns related to these misconceptions, consider an informational session with a Hospice Care local to your home. Ask these questions, and others that you may have so that you can make a decision without fear.
Please drop a comment below to share your own misconceptions or ideas about Hospice that you feel might not be true!
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