Medicare Guidelines for Hospice Care – The Rules


Hospice provides such an amazing service. When it comes to providing care, Medicare really allows hospice to move mountains for people.  

The origin of hospice began in 1967 with the first hospice opening,  and it really started to gain momentum during the 1970s.  Initially more than half of patients being treated in hospice were people with a diagnosis of cancer.

 As the practice of hospice has evolved, there are now over 1.5 million people in the United States that are currently receiving palliative services.  According to the statistics presented by the National Hospice and Palliative Care Organization  in 2015, a little more than a third of patients had a cancer diagnosis, partially due to the tremendous strides cancer research has made.  Patients diagnosed with Dementia are the second largest group of hospice patients, and number is expected to grow because of our aging baby boomer generation.  The next major classes of disease that are commonly treated in hospice are Heart and Lung related conditions.

Medicare started getting really interested in hospice care in the early 1980s, and that was because there was a tremendous value in this service.

 When people pass away in the hospital, it can be very costly and sometimes downright barbaric.  I recall when I first started hospice, and would have to be on call from time to time.   One of the responsibilities as the on call nurse was to focus on referrals for patients that were hospitalized.  These poor souls were only surviving because of valiant efforts of the intensive care unit.  Sometimes there is just nothing more that can be done.  

We are merely just mechanical beings and eventually we all wear out.  I remember looking back on those patients, and even more so on the families.  Many of these families having just experienced a nightmare of their loved one in a hospital for the last weeks in an Intensive Care Unit.   We would step in as hospice and stop the life support, and usually that patient would die within a few minutes, maybe a day or so.  It was always very sad to me when I would have to go a do that.  I would put myself in their shoes.  I would ask myself if this is how I would want to die. Everyone has a right to make that decision for themselves, but personally I would want to be comforted and in a warm safe place when I pass over.  

One of the main principles of hospice is very simply, everyone deserves a pain free death with dignity.

A really good example of how someone can benefit from hospice is taking a look at the people that are suffering with heart disease, more specifically heart failure.  Often times they experience a yo-yo effect with going to hospital.  These patients are trying their best to handle the symptoms of a complex disease, and it seems that every few months they end up having to go to the hospital for severe shortness of breath.  The hospital will admit the patient and prescribe aggressive treatments, and after several days, they are  sent feeling better, which is only temporary.  The doctors at the hospital cannot fix the problem, cure the disease, or reverse damage to the heart muscle. They can only prescribe medications and treatments to manage the unpleasant symptoms.  

That is exactly what hospice does as well, only we bring the hospital to you.  One of distinct differences between going to the hospital and be treated in your home is that Hospice’s primary focus is Quality of Life.  With the aggressive treatments in the hospital setting, the goal is to save lives.  Often times, they will go to extreme lengths, cause suffering, and there are no guarantees that will be successful in saving your life.  

The family is in a constant state of crisis, the patient is starting to feel more defeated with each hospitalization and everyone starts to wonder…. Where is the quality of life?  It really paints a picture of chaos.  The efforts by the hospital are doing very little to nothing to fixing the broken heart, they are merely giving this type of patient a little more time.


With hospice care, all of our patients are very closely monitored by a medical team, and they get the support they need to live out the rest of their lives comfortably with dignity.  It is my hope, that my patients are able to have as many meaningful interactions as possible with their loved ones.

Everyone in the United States is able to receive hospice services if they meet the criteria set forth by Medicare, and the ability to pay is NOT a factor.  

Of course a hospice agency has to generate income, and the majority of the money comes from Medicare and Medicaid reimbursements.  Often times, private insurance companies will also have a hospice benefit, but the Medicare revenue is the real fuel that sustains a successful hospice agency.   It was a very important moment in 1982 when Congress made changes to the Tax Equity and Fiscal Responsibility Act to include a “Medicare hospice benefit“.  The simple truth is that hospice is one of the best benefits that Medicare has to offer!  They pay 100% percent of ALL of the costs related to the illness.

The Rules……

Medicare has an established set of  guidelines outlined, referred to as the “Conditions of Participation“.  Hospice agencies are expected to abide by them.

The hospice doctor plays an integral part is certifying that a patient is eligible for the service, and justifying it to Medicare. There must be documentation from two doctors stating that the patient has been diagnosed with a terminal condition and life expectancy is less than six months.  No one really ever knows how long someone will live, but studies have shown that “patients may have live longer on hospice” than those who were not.  It is not uncommon for hospice services to extend beyond six months, and as long criteria is being met, the duration of services is open-ended.  The guidelines for particular illnesses are very detailed and outlined for hospice agencies to follow, and sometimes can be subject to interpretation.  We as human are complex and life is very far from black and white.  There are always the circumstances that surround the situation that allows for many variables.  I hope to simplify how we as healthcare professionals determine eligibility for hospice services.  

 

There are few basic general questions that if you or your loved one answers “YES”, then hospice services may be able to help.

 

  • Have you or your loved one been losing weight over the last year?
  • Have you or your loved one lost the ability to walk or walks with great difficulty with a recent history falling?
  • Do you or your loved have shortness of breath that interferes with the ability to walk, talk, or shower without assistance?
  • Have you or your loved one had multiple hospitalizations over the last year and have expressed a desire to avoid future trips to the hospital?

THE GENERAL MEDICARE GUIDELINES AS THEY PERTAIN TO A SPECIFIC ILLNESS

The human body is an intricately marvelous work of machinery and has multiple organ systems that interact and work together to sustain life. The following is a very simplified breakdown of each of the major organ systems and how eligibility is determined related to them.

CONDITIONS THAT AFFECT THE BRAIN

Dementia or memory loss is the largest group of patients that fall into the class, but we can also include conditions that are neurological disorders.  Some examples would include a diagnosis of Parkinson’s Disease, ALS, and Brain Injuries that are often times the result of a very serious Stroke.

 A Simplified Interpretation of the Guidelines >>>

  • Inability to Walk.
  • Dependence with Elimination, either wearing a diaper or requiring a urinary catheter.
  • Unable to say more than 6 words
  • Recent History of Infections- Urine, Respiratory, and/or breakdown to the skin.
  • Generally these individuals are progressively losing weight because of difficulty with eating and swallowing.

CONDITIONS THAT AFFECT THE HEART

This class generally consists of patients with a diagnosis of Congestive Heart Failure, but this is not exclusive.  A patient can be admitted for other conditions related to heart disease and usually the clinical history is significant and there are many supporting factors.

A Simplified Interpretation of the Guidelines >>>

  • Decreased ability to walk and shower independently.
  • Swelling of extremities and needs water pills.
  • Unable to lie down flat, is sleeping with several pillows at night or spends most of the time in the recliner.
  • Shortness of breath with activity and would benefit from having oxygen therapy accessible.

CONDITIONS THAT AFFECT THE LUNGS

In hospice there are multiple chronic types of lung disease are included.  The most commonly treated diagnosis is COPD (Chronic Obstructive Pulmonary Disease), but there are other patients with conditions like Pulmonary Fibrosis, and even lung transplants.

A Simplified Interpretation of the Guidelines >>>

  • Decreased ability to walk and shower independently.
  • Needing oxygen therapy during all hours of the day and night.
  • Requires medications to help breathing, including a steroid.
  • Has a chronic cough and history of respiratory infections and or pneumonia.

CONDITIONS THAT AFFECT THE LIVER

This class of illness generally consists of patients that have suffered with liver disease for a period of time and now the disease has progressed to a state of liver failure.  These patients are unique as the quality of care can seriously improve these patients’ quality of life and extend their life.  Hospice can provide services to these patients and even if organ transplant is a consideration.  These patients are often formally diagnosed with conditions like Hepatic Encephalopathy, Cirrhosis of Liver, and Hepatitis C Virus which all support a diagnosis of liver failure.

A Simplified Interpretation of the Guidelines >>>

  • Decreased ability to walk and shower independently.
  • Episodes of confusion related to a condition called Hepatic Encephalopathy or increased ammonia levels in the brain.
  • A patient’s blood is “thin” and patient bleeds freely.
  • Swelling of the abdomen.

CONDITIONS THAT AFFECT THE KIDNEYS

Kidney disease is very prevalent and often times a secondary condition related to disease processes like Diabetes or uncontrolled high blood pressure.   Specifically there are five distinct stages of Chronic Kidney disease, classified in relation severity.  Stage 5 is considered a complete Kidney Failure, and often these patients will pursue dialysis treatments and as form of life support.

A Simplified Interpretation of the Guidelines >>>

Individuals that have been referred to dialysis or currently on dialysis, and do not want to continue with this form of life support.

CANCER OF ALL ORIGINS

A Simplified Interpretation of the Guidelines >>>

  • Disease has traveled to other organ systems and is considered “Stage 4”.
  • The patient no longer wants to seek or is no longer a candidate for aggressive treatments like Chemotherapy or Radiation.

EXCEPTIONS

There are many exceptions, and there is no hard fast rule. The ultimate decision is left to the discretion of the Hospice Medical Director. One example that readily comes to mind is a diagnosis of Unexplained Weight Loss. Medicare and hospice  guidelines will permit this, but it has to be associated with supporting lab values that reflect that a patient is suffering from malnutrition.

I would encourage to talk to your or current treating doctor if you think that you may benefit from the help that hospice care provides.  I hope this information was useful.  Please feel free to leave a comment or ask a question.




11 Comments

  • Angelina April 4, 2017 at 5:42 pm

    Thank you so much for the this article! My mom is a fairly healthy 72 right now despite her diagnosis with COPD. Still, it’s been on my mind a lot lately that the day is coming when I’ll need to be there for her a lot more. I know that, like my grandmother, my mother would much rather pass away in her own home. I had no idea Medicare had this benefit for her! It’s comforting to know this.

    One thing I am wondering after reading over some of the resources you linked to. I am guessing that routine and continuous home care is care provided in the patient’s own, personal, home? Is my understanding of that correct? If so, I noticed that continuous home care was provided for a very small percentage of people compared to routine home care. I’m wondering what, exactly, is the difference between these two types of care?

    Reply
    • Heather Williams RN CHPN April 5, 2017 at 1:52 am

      Hi Angelina,
      Thank you for taking the time, I am glad you found the article useful. This is great question and does cause sometimes cause confusion. Most patients usually do very well in the home with the team doing regular home visits, and supporting the caregiver in taking care of their loved one. Continuous care is a higher level of hospice care and many people will refer to this as “Crisis Care” or “CC”. This type of care is provided in the home, and consists of a nurse 24 hours a day at the bedside to provide direct patient care. The stipulation is that Medicare has some pretty strict criteria to allow someone to be eligible for CC. When we start continuous care, it usually only lasts for a few days, and the goal is to stabilize the situation. Triggers for crisis care are uncontrolled symptoms of pain, shortness of breath, bleeding, and sometimes severe caregiver burnout and fatigue. Honestly, if you have a good Case Manager and your loved one’s symptoms are well managed, it is not often needed, but a very nice safeguard to have in place nonetheless. As a side note, every hospice agency that accepts Medicare patients are obligated to provide continuous care if the need arises. I really Hope that was helpful.
      Many Blessings to you and your loved ones,
      Heather

      Reply
      • Angelina April 6, 2017 at 1:13 pm

        Thank you for the more detailed explanation. It did, indeed, help a lot!

        Reply
  • Caryn April 5, 2017 at 4:10 am

    Hello,
    Your website has hit home. My dad is 82 and currently has a lot of health issues. He was told he had six months to live. He isn’t on hospice at this time, but I’m sure he will in the near future.
    When my dad is ready to go on hospice, I’m going to refer back to your website for guidance. Thank you for your help.
    Caryn

    Reply
    • Heather Williams RN CHPN April 5, 2017 at 1:14 pm

      Hi Caryn,
      Thank you for taking the time. I am sorry to hear about your dad, this can be very stressful for everyone. Feel to reach out to me anytime.
      Many Blessing to you and your family.
      Take Care,
      Heather

      Reply
  • Anthony April 9, 2017 at 5:04 pm

    Having had a couple of acquaintances have hospice care, I can say this website is really helpful. The decision to get hospice is usually painful because it means the end is likely near for your loved one. That was the case with one of my friends who came down with ALS. It is heartbreaking to watch someone die like that. I will be bookmarking your website and referring back to it from time to time as the need arises. Thank you.
    – Anthony.

    Reply
    • Heather Williams RN CHPN April 10, 2017 at 2:17 pm

      Thank for your comment. My grandfather also passed away from ALS, and I completely agree you on it being heartbreaking. Feel free to reach out to me anytime.
      Take Care, Heather

      Reply
  • Marley Dawkins April 28, 2017 at 12:36 pm

    Wow Heather this is a really detailed breakdown of the history and rules of the Medicare and hospice care systems. I really had no idea that it was for the diagnosis and treatment of cancer mainly in the beginning.

    Have you worked in the healthcare industry yourself? Your knowledge seems to be really advanced, personally I’m only familiar with how it works in the UK.

    Cheers

    Reply
    • Heather Williams RN CHPN April 29, 2017 at 2:21 am

      Hi Marley,
      I am a certified hospice nurse and have worked in healthcare for 16 years, and appreciate you taking the interest in my article. Medicare has a lot of rules and navigating them is a skill in itself. My attempt was to keep it as simple as I could. I am aware of some hospice practices in the UK, and it appears that group hospice houses are the preferred delivery of care. I intend to learn more about how hospice is delivered all over the world.
      Thank you so much and take care,
      Heather

      Reply
  • Linda May 1, 2017 at 1:19 pm

    A very comprehensive outline of the complexities of the medicare/hospice ‘dance’. I have an elderly aunt in her mid 90’s suffering from dementia and inability to walk. Since she is not technically ready for hospice as she doesn’t meet the requirements, her life has no quality, yet the money needed to keep her lack of quality life is astounding. She will go through all her money if she lives a few more years. People who have elderly relatives should read your article to have an idea of this world.

    Reply
    • Heather Williams RN CHPN May 3, 2017 at 11:48 am

      Thank you for your comment. Dementia is a very slow progressing illness, and often times involves years of care and can be quite costly. Many blessings to you and your family.
      Heather

      Reply

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