Early communication eases blow of discharge Noncancer diagnoses need careful review
Early communication eases blow of discharge Noncancer diagnoses need careful review
Caring for many dying patients under current Medicare hospice guidelines is like forcing a square peg into a round hole. Current regulations require patients to have a six-months-or-less terminal diagnosis, despite the fact that many fatal diseases do not progress at a predictable rate.
As a result, hospices are sometimes faced with the dilemma of having to discharge patients prior to dying, cutting them off from the kind of care that is best designed to prepare them for the inevitable. Worse, patients who no longer conform to Medi-care’s hospice eligibility requirements are left with few options; they can enter nursing homes or simply go without professional care.
While this can happen with all types of terminal illnesses, experts say noncancer diagnoses, such amyotrophic lateral sclerosis (ALS), have the greatest potential for having to make the heart-wrenching decision to discharge a dying patient from hospice. While regulations leave the specter of discharge for some patients, hospices can take certain precautions to soften the blow of discharge on the patient and family and provide resources for them until the patient’s health declines to a point that meets hospice eligibility requirements.
"The whole concept of the Medicare hospice benefit was based on the cancer model of care," says Jenny Schrom, RN, CRNH, regulatory and technical assistance manager for the Alexandria, VA-based National Hospice and Palliative Care Organization (NHPCO). "There’s nothing perfect about trying to predict when someone with cancer is going to die, and it is certainly not perfect with noncancer diagnoses."
There will be instances when hospices must make an unpopular decision, says Pam Melbourne, RN, director of clinical services at Hospice Atlanta. In addition, hospices must look at referrals more closely, despite the fact that many hospices are trying to increase referrals.
Despite a hospice’s best efforts to make sure every patient meets the eligibility requirements stipulated in his or her Medicare carrier’s local medical review policies (LMRPs), some patients don’t steadily decline in health — and sometimes they take a turn for the better.
An ALS patient may meet the eligibility requirements spelled out by LMRPs at the time of admission. While early symptoms of ALS include slight muscle weakness, clumsy hand movements, and/or difficulty performing tasks that require delicate movements of the fingers and/or hands, patients must also exhibit severe difficulty in swallowing to the point where it affects their nutritional intake; severely impaired speech; and require assistance to breathe, to name a few requirements.
For example, a patient whose speech has been slowed and has trouble breathing on his own is admitted to hospice. The patient remains in hospice care for six months, but the disease has shown little progression during that time. Because the hospice is treating the symptoms of the disease, some areas show improvement, causing the patient to fall outside the LMRP criteria. The patient has gained weight and swallowing has improved.
From the hospice standpoint, ALS is an incurable disease that will eventually take the life of the patient. Even though a patient’s condition does not decline continually, most hospice workers would like to see the patient remain under the care of hospice workers. Under hospice care, patients not only receive care for their symptoms, but benefit from spiritual and emotional care, as well.
But Medicare rules offer little wiggle room, says Schrom. Despite the problems caused by prohibitive regulations, hospices have little choice other than to follow them without exception. "Medicare has pretty strict expectations," says Schrom. "Medicare requires us to predict that the patient is going to die within a six-month period, and document why we’ve made that prediction."
Life is unpredictable
ALS is a degenerative disease of the nervous system, affecting the brain’s motor neurons that carry impulses from the brain and spinal cord to the muscles. This disorder generally affects both upper and lower motor neurons, resulting in muscular weakness and the progressive wasting of muscles that have lost their nerve supply. Degeneration of those neurons causes muscle weakness and muscle loss, usually starting in the hands and arms and then spreading to other parts of the body. Difficulty with speaking, swallowing, and breathing ensues, and death usually follows within three to five years.
But physicians have difficulty actually predicting life expectancy. The result is often either referring a patient too soon or too late. Despite admissions that follow guidelines, ALS patients can linger for years after a hospice admission.
Prepare patient and family
Because noncancer diagnoses like ALS present a probability of future discharge, Schrom says hospices need to take the following actions to lessen the impact of removing patients from hospice care:
• Explain to the patient and family at admission that discharge is a possibility after six months.
Patients and their families need to understand that discharge is a possibility and it is the job of hospice workers to explain this. Patients should be told that if their illness takes them beyond six months, and if they do not meet Medicare’s eligibility guidelines, the hospice can no longer care for them unless an alternative funding source is found.
"We need to help the family be open to the future," says Schrom.
At admission, however, the family is already overwhelmed and the message could get lost among the flood of other information and emotions. Hospice workers should not be afraid to tell the patient and family again as they update them on the patient’s condition.
"We’ve learned from experience that you have to honest with the patient and family, and approach it in a kind, sympathetic way," says Melbourne. "As difficult as it is to explain the possibility of discharge in the beginning, I don’t think it’s a good idea to wait."
• Include the physician in interdisciplinary team meetings.
One of the more common complaints levied by treating physicians toward hospices is the lack of communication between the hospice and physician. Often physicians feel out of the information loop when it comes to their own patients.
Schrom says hospices should make physicians part of their interdisciplinary teams and include them in their team meetings. This helps facilitate the exchange of information and plays a large role making the physician feel in control of his or her patient’s care.
• Use physician-to-physician contact.
When difficult decisions need to be made, they should be communicated to the treating physician by the hospice medical director rather than a nurse or other hospice worker. The reasoning for discharge can be discussed by professionals with equal credentials. The treating physician will likely feel as if the situation was adequately explained and addressed by someone who has the final decision authority. The treating physician can also help explain the situation to the patient and family.
"This is important because the [treating] physician is probably the person with whom the patient and family have the strongest emotional attachment," says Schrom.
• Clearly identify the decision-making process to the treating physician.
The treating physician, patient, and family should be told how the decision to discharge was made. This explanation should include an explanation of how the interdisciplinary team works and how each team member plays a role in the decision-making process.
"It’s important to show that the interdisciplinary team doesn’t just make medical decisions," says Schrom. "Interdisciplinary team meetings are also a place where social and spiritual care decisions are made."
Educating referral sources also goes a long way toward reducing the number of discharges and having to refuse hospice admissions. Educating physicians, for example, on eligibility guidelines for noncancer diagnoses will help them understand when it is appropriate to refer to hospice.
Providing physicians with LMRP guidelines and discussing the patient’s eligibility at the time of referral will help physicians better understand the process and help streamline admissions.
Subtle LMRP differences
Here are LMRP guidelines for ALS from three Medicare fiscal intermediaries and carriers:
• Blue Cross of California.
I. Hospice providers who are paid for Medicare through Blue Cross must document the following to prove a terminal prognosis of six months or less:
A. Dyspnea at rest.
B. Require supplemental oxygen at rest.
C. Patient requires artificial ventilation.
II. Patient must demonstrate critical nutritional impairment as evidenced by all the following characteristics:
A. Oral intake of nutrients and fluids insufficient to sustain life.
B. Continuing weight loss.
C. Dehydration or hypovolemia.
D. Absence of artificial feeding methods.
III. Patient must demonstrate both rapid progression of ALS and life-threatening complications:
A. Rapid progression of ALS as evidenced by all of the following characteristics occurring within the 12 months preceding initial hospice certification.
i) Progression from independent ambulation to wheelchair or bedbound status.
ii) Progression from normal to barely intelligible or unintelligible speech.
iii) Progression from regular to pureed diet.
iv) Progression from independence in most or all activities of daily living (ADLs) to needing major assistance by caregiver in all ADLs.
B. Life-threatening complications as evidenced by one of the following within the 12 months preceding initial hospice certification.
i) Recurrent aspiration pneumonia (with or without tube feedings).
ii) Upper urinary tract infection (e.g., pyelonephritis).
iii) Sepsis.
iv) Recurrent fever after antibiotic therapy.
v) Stage 3 or 4 decubitus ulcer.
Documentation certifying terminal status must contain enough information to confirm terminal status upon review. Documentation meeting the above criteria would meet this requirement. If the patient does not meet the above criteria, yet is deemed appropriate for hospice care, sufficient documentation of the patient’s condition that justifies terminal status, in the absence of meeting the above criteria, would be necessary. Recertification for hospice care requires that the same standards be met as for initial certification.
• Palmetto Government Benefits Administrators, Columbia, SC.
According this carrier, patients will be considered to be in the terminal stage of ALS if they meet the following criteria (must fulfill 1, 2, or 3):
1. The patient must demonstrate critically impaired breathing capacity.
a. Critically impaired breathing capacity as demonstrated by all of the following characteristics occurring within the 12 months preceding initial hospice certification:
— vital capacity (VC) less than 30% of normal;
— significant dyspnea at rest;
— patient requires supplemental oxygen at rest;
— patient declines artificial ventilation.
2. Patient must demonstrate both rapid progression of ALS and critical nutritional impairment.
Rapid progression of ALS as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
— progression from independent ambulation to wheelchair or bedbound status;
— progression from normal to barely intelligible or unintelligible speech;
— progression from normal to pureed diet;
— progression from independence in most or all activities of daily living (ADLs) to needing major assistance by caretaker in all ADLs.
Critical nutritional impairment as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
— oral intake of nutrients and fluids insufficient to sustain life;
— continuing weight loss;
— dehydration or hypovolemia;
— absence of artificial feeding methods.
3. Patient must demonstrate both rapid progression of ALS and life-threatening complications:
— rapid progression of ALS (see 2 above);
— life-threatening complications as demonstrated by one of the following characteristics occurring within the 12 months preceding initial hospice certification;
— recurrent aspiration pneumonia (with or without tube feedings);
— upper urinary tract infection, e.g., pyelonephritis;
— sepsis;
— recurrent fever after antibiotic therapy.
• Wellmark Inc., Des Moines, IA.
According to Wellmark, patients will be considered to be in the terminal stage of ALS if they meet the following criteria (must fulfill 1, 2, or 3):
1. Patient must demonstrate critically impaired breathing capacity.
— Critically impaired breathing capacity as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
— VC less than 30% of normal;
— dyspnea at rest;
— requiring supplemental oxygen at rest;
— patient declines artificial ventilation; external ventilation used for comfort measures only.
2. Patient must demonstrate both rapid progression of ALS and critical nutritional impairment. Rapid progression of ALS as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
— progression from independent ambulation to wheelchair to bedbound status;
— progression from normal to barely intelligible or unintelligible speech;
— progression from normal to pureed diet;
— progression from independence in most or all ADLs to needing major assistance by caretaker in all ADLs;
— critical nutritional impairment as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
— oral intake of nutrients and fluids insufficient to sustain life;
— continuing weight loss;
— dehydration or hypovolemia;
— absence of artificial feeding methods, sufficient to sustain life, but not for relieving hunger.
3. Patient must demonstrate both rapid progression of ALS and life-threatening complications. Life-threatening complications as demonstrated by one of the following characteristics occurring within the 12 months preceding initial hospice certification:
— recurrent aspiration pneumonia (with or without tube feedings);
— upper urinary tract infection (e.g., pyelonephritis);
— sepsis;
— recurrent fever after antibiotic therapy.
Hospices should plan for discharge
Even if admission to hospice follows eligibility guidelines to the letter, patients with noncancer diagnoses can fall outside of the eligibility boundaries and have to be discharged. Melbourne says hospices should plan for the possibility by preparing a list of resources and potential referrals for the patient and family.
Identifying community resources and care alternatives should be part of the care plan that was prepared just after admission, along with any notations regarding potential holes in post-hospice resources.
"You have to be creative," Melbourne says. "Don’t be afraid to get physician input. Sometimes the only alternative isn’t a popular one. You just have to do the best that you can." n
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