Myths and Misconceptions about Hospice

Hospice is often a dreaded word that brings feelings of fear, sadness and despair to most people. It is, of course, only spoken about at the end of someone’s life and that, in and of itself, causes an array of negative and scary emotions for most people. However, instead of something to be feared, I think that with a better understanding of the purpose and mission of hospice, many people can come to appreciate and fully benefit from the services and care that hospice has to offer and no longer be as afraid or scared.

The truth is, hospice is a benefit that is offered at no cost to the patient and his or her family. The goals of hospice are to maintain and offer comfort and dignity to those with a life expectancy of 6 months or less. This does not mean that a patient must actually die or that they WILL die within 6 months if they accept hospice services. The “6-month or less prognosis” is a medical guestimate that physicians make for the “average life expectancy of persons with similar disease process”. We all know that each of us as individuals are unique and that no one can precisely predict one’s life expectancy. I have had my fair share of patients who have “outlived” the “6-month prediction”. In the cases where a patient’s life expectancy remains 6 months or less (even though they have exceeded the initial 6 months), then hospice services will continue to be continued. If, however, a patient’s health improves to the point where his/her life expectancy is now going to be longer than 6 months, then hospice services will be discontinued until the patient’s condition changes (if it ever changes).

Hospice should not be feared but rather better understood. Below, I have outlined 5 of the most common MISCONCEPTIONS that I have seen my patients have regarding hospice services.

MYTH 1. Hospice expedites death

I often hear from patients that they do not want hospice because “all they do is give you medications to expedite death!” This is completely untrue and actually illegal in most states as it is not legal to administer any medications with the intent to speed up the end of one’s life (there are currently 6 states where physician assisted suicide is currently legal). Hospice is meant to support and ensure that a person remains as comfortable and dignified as possible at, or near, the end of their life. Whatever symptoms a person experiences, be it pain, nausea, shortness of breath, anxiety, or any other symptom that may lead to discomfort…. these are the symptoms targeted and treated by the hospice providers. It is true, however, that if a patient is suffering from significant amounts of pain that certain pain medications that are administered can have the side effect of making someone sleepy and somnolent. Some pain relieving medications can also lead to slower breathing as well.   The goal of any hospice medications prescribed, however, is meant to alleviate suffering and are not meant to expedite one’s death.

There are some patients that are treated by the hospice team that actually DO recover significantly enough that they are discharged from hospice services. One of my most favorite patients comes to mind whenever I discuss hospice. Ms. Lilly (whom I have written about in a separate post) came to me while she was on hospice care. When I first met her, she was 74 years old and suffered from incredibly debilitating rheumatoid arthritis. Her disease caused her so much pain that she was unable to even get out of bed. This bed-bound state, in turn, led to the development of a significant bed sore. Her family moved her into a nursing home to receive hospice care at what was thought to be the “end of her life” due to her frail state. Well, to everyone’s surprise, with hospice support and the staff at the nursing home, her pain was well controlled and her wound was ultimately healed. Today, 10 years later, Ms. Lilly sits up in her wheelchair and happily greets people every morning with her contagious smile…. Completely off of hospice!! Hospice does not (and is not meant) to change the natural history of a person’s disease process. As stated earlier, it does NOT expedite one’s death.

MYTH 2. Hospice is only for cancer patients

I actually run into this misconception a lot in my own practice. Contrary to what most people think, over 65% of all hospice enrollees do NOT have cancer.   My patients who suffer from diseases such as congestive heart failure (CHF) or chronic obstructive pulmonary disease (COPD) are often surprised when I bring up hospice.

Again, hospice is a service that is available to anyone (whatever age or medical diagnosis) who has a medically determined life expectancy of 6 months or less. This includes children, people with non-cancer diagnoses such as COPD, congestive heart failure, multiple sclerosis, dementia, etc. to name just a few. Hospice also provides excellent bereavement services for family members during the patient’s enrollment period and after the patient ‘s death, as well. Hospice care utilizes an interdisciplinary team approach towards care. The hospice team includes: Physicians, nurses, nurse aides, clergy, social workers and volunteers.

MYTH 3. Hospice provides the actual caregivers or someone to help provide constant care for the enrolled patient.

It is true that most people who actually qualify for hospice services will need some level of caregiving assistance towards the end of their life. Unfortunately, caregivers are NOT part of the hospice benefit package. Many people incorrectly expect that if they sign up for hospice that hospice will actually provide the caregivers for them (or for their loved ones).

By definition, a caregiver is someone who provides supervision, assistance, meal preparation, etc. for a patient. A caregiver is NOT a nurse and the cost of such help varies from state to state but averages around $18-25/hour. This can prove to be quite costly, which is why, many times, it is a family member who steps in to take on the role of caregiver. Many patients of mine are hesitant to spend money on themselves…even at the end of their lives. Family members also feel guilty if they are not the ones providing care for their dying spouse or parent. In my opinion, any money that can be spent on caregivers is well worth it. By spending the money to hire outside help, the spousal relationship or parent-child relationship will often be better preserved and remain in a healthier state. Family members are able to maintain their own health and offer better emotional support to the patient in the role of a spouse/child rather than as a caregiver.

MYTH 4. Hospice is a PLACE where you go to die

Many people assume that hospice is merely a place to go and die. Inpatient hospice facilities do exist, however, “hospice” is not a physical building or place. Hospice is a team of people who offer care and support. Physicians lead the interdisciplinary team to ensure any symptoms the patient experiences are adequately controlled. Nurses on the hospice team visit regularly to assess any symptoms a patient may be suffering from. Nurses are able to treat wounds, help with tube feeding, administer intravenous or subcutaneous medications or fluid, manage foley catheters, etc. Most of the care that patients receive, however, is in their own home.

There are only very limited circumstances in which a patient would be moved to an inpatient hospice facility. To help better understand when this might be the case, one must know that there are FOUR different levels of hospice care available. Only patients who are considered to be “inpatient level of medical care” are moved to an actual hospice facility (or hospice contracted facility). According to the National Health and Palliative Care Organization (NHPCO), in 2013, less than 5% of patient care days were delivered in a facility at the “inpatient level of care.”

The four (4) levels of hospice care as defined by Medicare are:

A.  Routine Home Care:

This is THE most common level of hospice services in the United States. Greater than 95% of all hospice patients are admitted at this routine level. Core services are provided by the hospice interdisciplinary team in the patient’s home. The patient’s home may be a private home, an assisted living facility, a boarding home, or a long-term care facility – it is wherever the patient happens to live.

B.  Respite Care

Inpatient Respite Care is available only to provide temporary relief to the patient’s actual primary caregiver. Respite care can be provided in a hospital, hospice facility, or a long term care facility that has sufficient 24 hour nursing personnel present on all shifts to guarantee that patient’s needs are met. Respite care is provided for a maximum of 5 consecutive days per benefit period. Often times caregivers schedule respite in order to travel, rest or to take care of their own healthcare needs.

When a patient is in respite care, it is the hospice’s financial responsibility to pay room and board to the facility where the patient is placed. The hospice agency may provide respite in a variety of contracted settings (i.e. local nursing homes, assisted living facilities, etc.)

C.  Continuous Care

Continuous Care is intended to support the patient and their caregiver(s) through brief periods of crisis (e.g., if a patient becomes delirious at the end of life and the doctor is trying to titrate treatment to resolve this symptom). Care can be provided for a minimum of 8 hours and up to 24 to achieve management of acute medical symptoms. This period may last until the crisis is resolved, but the general timeframe set by Medicare is 3-5 days. The care must be predominantly skilled nursing care. Continuous home care may be provided in the patient’s home wherever the patient is living. The care provided is meant to help manage the crisis in the patient’s current care setting.

D.  Inpatient Hospice

The Medicare Hospice Benefit provides for care to be delivered outside of the patient’s residence or home where intensive nursing and other support is required only in certain instances.

Criteria for this level of care include:

• Uncontrolled distressing physical symptoms (e.g. uncontrolled pain, intractable nausea, respiratory distress, severe wounds, etc.).
• Psychosocial problems (e.g. unsafe home environment).

Inpatient hospice care can be provided in a variety of settings including dedicated inpatient hospice facilities or contracted beds within hospitals/nursing homes. The key factor as stated by Medicare is…”ONLY IF CARE REQUIRED BY THE PATIENT CANNOT BE MANAGED WHERE THE PATIENT RESIDES, MAY THE PATIENT BE INPATIENT”

Imminent death alone does not qualify a patient for inpatient hospice care.

MYTH 5. Everyone should have hospice at the end of his/her life

There is the right time, person and place for hospice. Not all patients that I see would benefit from hospice. There are two of my patients that come to mind that I think can highlight when hospice may/may not be necessary.

The first patient is a 79-year-old gentleman who had been residing at the nursing home for over 6 years. He had dementia and progressively worsening kidney disease. He had a very caring nephew who lived out of state that I was in contact with regularly. As the patient’s kidney disease worsened, it became apparent that without dialysis, that his life expectancy would be limited. Because the patient’s original wish was clear (when he was competent before his worsening dementia) that he would never want dialysis, I began having discussions with his nephew about hospice. His nephew opted not to sign up. The main reason he made this decision was because he knew that his uncle was not a sociable person at baseline. He did not like to socialize or visit with anyone. The patient’s nephew also felt that all of his uncle’s needs could be and were adequately attended to by the staff at the current nursing facility. There were no family members in the area who would benefit from bereavement services after his uncle’s death and I felt confident that I could ensure that the patient’ remained comfortable at the end of his life. The patient passed away peacefully and comfortably at the nursing home without any hospice services.

In contrast, I cared for an 89-year-old elderly lady with dementia who had been living in the nursing home for years. Her health began to deteriorate and it became clear that her life expectancy was less than 6 months. I began discussions about hospice with her adult daughter. Because her daughter lived locally in town, she was able to visit her mom almost daily. She shared with the staff and me that her mother was a socialite and loved meeting new people and being in new situations. In fact, she shared a picture book of her mother looking glamorous as she traveled the world. As the patient approached the end of her life, she became nonverbal. Her daughter opted to sign her mother up for hospice services. New nurses and new faces did not seem to bother this patient and actually seemed to be welcomed by her. Additional hospice staff would visit regularly and offer support to both the patient and her daughter. This patient also passed away in her home (the nursing home) comfortably and peacefully …with hospice services.

There are no cookie-cutter recipes for what type of patient would benefit from hospice services. A better understanding and realistic expectation of what hospice is meant to provide and what hospice can offer to patients and their families is important. Speaking openly with the patient and their physician(s) can often help families make the right decision. Hospice is a service that should offer comfort and support, not stress or dissatisfaction.