Managing death is a normal part of internal medicine and family medicine practice. The one thing that all of our patients have in common is that they eventually die. When death is expected, due to a terminal condition, hospice is an option. Hospice is popular – over the past 20 years, hospice use by Medicare beneficiaries who are nearing death has increased from 22.9% in 2020 to 51.6% in 2019. However, too often we either refer patients to hospice too late in their disease or do not refer them at all. For 30 years, I specialized in the care of patients with idiopathic pulmonary fibrosis, a disease with a life expectancy of 3-5 years unless a patient could get a lung transplant. Hospice referrals were commonplace in my practice. Recently, former president, Jimmy Carter, entered hospice and this has rekindled the public conversation about hospice.
American’s preferences about death
A 2017 Kaiser Family Foundation survey found that there is a discrepancy between how Americans want to die versus how they actually do die. 71% of Americans believe that “helping people die without pain, discomfort, and stress” is the most important priority whereas only 19% believe that “preventing death and extending life as long as possible” should be the top healthcare priority. However, only 37% of Americans believe that the current healthcare system places the right amount of emphasis on these priorities. When it comes to hospice care, 70% of Americans report knowing at least a little about hospice and of these, 85% have a positive opinion about hospice.
When asked about the importance of different factors regarding death, Americans prioritize quality over quantity. Most important is ensuring that family members are not financially burdened by one’s healthcare. Least important was living as long as possible. However, there are notable racial/ethnic differences: only 18% of White Americans believe that “living as long as possible” is extremely important whereas 28% of Hispanic Americans and 45% of Black Americans believe that “living was long as possible” is extremely important. These differences can affect how different racial/ethnic groups view hospice and their willingness to enroll in hospice.
Only 11% of all Americans report discussing end-of-life care with their physician; for Americans over age 65, that percentage only rises to 22%. On the other hand, 92% of Americans report that they would feel comfortable discussing end-of-life care with a doctor or other healthcare provider. Overall, 27% of Americans have written end-of-life directives; for those age 65 or older, 51% have written advance directives. Regarding where we prefer to die, 71% of Americans would prefer to die in their own home; 9% prefer to die in a hospital, 7% prefer an inpatient hospice, and 1% prefer a nursing home.
In reality, most people do not die in their preferred location. A 2019 study in the New England Journal of Medicine found that for the first time in over 100 years, more Americans die at home than in a hospital. However, only 30.7% of Americans died at home, meaning that more than half of the people who wanted to die at home died somewhere else. The study found that 29.8% of Americans died in a hospital, 20.8% died in a nursing home, and 8.3% died in a hospice facility.
What does hospice do?
A patient’s hospice benefits depends on their health insurance coverage. Because 72.5% of Americans die after age 65, most deaths occur when people are covered by Medicare. For people younger than age 65 covered by commercial health insurance policies, accidents, suicide, homicide, and COVID cause the majority of deaths and as a result, relatively few deaths in people with commercial insurance are amenable to hospice care. However, commercial insurance policies often provide very different hospice benefits compared to Medicare. For example, Anthem Blue Cross & Blue Shield allows enrollment in hospice for up to 12 months prior to death (compared to 6 months for Medicare) and allows concurrent use of disease-modifying treatments (not allowed by Medicare).
Medicare’s hospice benefit falls under Medicare Part A. To qualify for hospice under Medicare, patients must meet 3 criteria:
- Two physicians (both the patient’s regular physician and the hospice physician) must certify that the patient is terminally ill and expected to live less than 6 months.
- The patient accepts that the care will change from curative care to palliative care.
- The patient signs a statement agreeing to accept hospice care instead of other forms of Medicare services for the terminal condition.
The patient’s costs of hospice under Medicare are generally lower than the patient’s cost of usual medical care. Secondary insurance can provide additional coverage. Specific to Medicare:
- There is no cost to the patient for hospice care.
- The patient has a 5% co-pay for outpatient medications (including those for pain and palliation).
- The patient has a 5% co-pay for respite care.
- Regular Medicare benefits cover the cost of treating medical conditions not related to the terminal condition.
- Hospice does not cover regular nursing home costs for those patients who already reside in a nursing home.
- Once in hospice, Medicare will no longer pay for other services such as:
- Treatments and prescription medications intended to cure the patient’s terminal condition.
- Care by any physician or provider not set up by the hospice team. The patient can still see their regular doctor or nurse practitioner if the patient chooses him or her to be the attending medical professional to supervise their hospice care.
- Emergency department care, inpatient care, or ambulance services unless these are arranged by the patient’s hospice provider.
Medicare’s hospice benefit is quite comprehensive and covers many services that most physicians are unaware of including:
- Doctors’ services.
- Nursing and medical services.
- Durable medical equipment for pain relief and symptom management.
- Medical supplies, like bandages or catheters.
- Drugs for pain and symptom management.
- Aide and homemaker services.
- Physical therapy.
- Occupational therapy.
- Speech therapy.
- Social services.
- Dietary counseling.
- Spiritual and grief counseling (for both the patient and their family).
- Short-term inpatient care for pain and symptom management.
- Inpatient respite care up to 5 days per stay (respite care allows the usual caregiver, such as a family member or friend, to have a rest from providing care).
- Other pain and palliative treatments as determined by the hospice providers.
Selecting a hospice provider
In many smaller communities and rural areas, selecting a hospice is easy since there may only be one option. In larger communities, there are many different hospice providers to chose from. One resource is Medicare’s Hospice Compare website that lists Medicare-approved hospices in your area and includes a star rating based on previous family caregiver CAHPS surveys. Often, patients will prefer a specific hospice based on past experiences of family members or friends. When enrolling a patient in hospice, there are several questions for the physician to ask himself/herself:
Will I be the hospice physician of record? There are generally 2 options, either be the physician responsible for hospice care or transfer care to the hospice medical director. There are advantages and disadvantages to both options. Being the hospice physician of record allows you to continue your doctor-patient relationship and the patients often prefer to have their hospice care overseen by a physician that they know and trust. However, this role comes with a great deal of responsibility. You have to be comfortable prescribing medications used for pain and palliative care and you have to be available by phone 24 hours a day/7 days a week. Generally, the hospice will have its own standard hospice admission orders, including medications and standard dosing; however, conditions change frequently and although hospice nurses and pharmacists are often very good at recommending medication changes, the responsibility for them ultimately resides with the ordering physician. In addition, the hospice nurses who are on-site at the patient’s home do not want to have to call an answering service and wait for a rotating on-call physician to call them back. When I have been the hospice physician of record for my patients, I gave my cell phone number to the hospice nurses and was on call every night and weekend for that patient while in hospice. On the other hand, having the hospice medical director assume attending physician responsibilities relieves you of having to be available at all times and usually, the medical director is more experienced with the use and dosing of pain and palliative medications. Even if you defer the hospice medical care to the hospice medical director, you can still see the patient for medical conditions unrelated to the terminal condition; however, you must attach the GW-modifier to the CPT code when billing for the encounter.
Will your medical malpractice insurance policy cover you? Physicians in private practice who purchase malpractice policies from a commercial insurance company usually have few or no restrictions regarding where they practice medicine. But hospital-employed physicians are frequently covered by hospital self-insurance plans. These plans often restrict coverage to medical care provided at hospital-owned or affiliated locations. As an example, my malpractice insurance was provided by our hospital, that was self-insured. I had to get special approval from our hospital’s insurance administrator to see patients for home visits, including home hospice care as the hospice attending physician of record. Malpractice insurance coverage for other locations, such as respite facilities or inpatient hospice facilities, may also be required.
Who is the hospice medical director? Frequently, the medical director of a hospice and the other hospice-affiliated physicians will have done pain and palliative medicine fellowships. However, this is not a legal requirement and consequently, some hospice medical directors do not have formal training in palliative care. All to often, physicians just write an order to “Consult hospice” without thinking about the physician who will be responsible for overseeing medical care for the patient. You should find out who the hospice physicians are for the hospice organization that you consult and then use the same judiciousness that you would use if you were consulting any other physician or medical group.
For-profit versus nonprofit hospices. In 2020, 73% of hospice organizations in the U.S. were for-profit. Although many for-profit hospices are excellent, the literature shows that on aggregate, there are some important differences between for-profit and nonprofit hospices. Overall, for-profit hospices tend to have a narrower range of services, less comprehensive bereavement services, lower staff:patient ratios, and less professionalized staff. A study in this month’s JAMA Internal Medicine found that for-profit hospices had significantly lower patient and family satisfaction scores than nonprofit hospices. The profit status of a hospice should never be the sole determinant in choosing a hospice for a patient but it may at least be worth checking the star rating on Medicare’s website when considering a specific for-profit hospice.
Where is respite care provided? Home hospice supplements care from family and friends but does not replace that care. As patients become more incapacitated from a terminal disease, the care demands on family members can be overwhelming at times. Respite care allows those family caregivers to have a break for several days by temporarily admitting the patient to an inpatient hospice facility, nursing facility, community center, or adult daycare center. If the hospice is affiliated with a poorly run respite facility, then respite care can paradoxically increase the stress on family members if the patient has a bad experience while in respite care.
What inpatient hospice care is available? For some patients, care in the last days of a terminal illness simply cannot be effectively provided in the home. This was frequently the case with my patients transitioning from being inpatients in the intensive care unit directly to hospice where death was expected within two or three days. Some hospitals have on-site hospice units but if a given hospice organization is not affiliated with that particular unit, the patient may have to go to an unfamiliar facility, sometime even in a different community. This can result in the patient spending their final few days far away from family and friends.
What medications and treatments will be discontinued? When a patient enters hospice under Medicare, treatments intended to cure the terminal condition are discontinued. This includes chemotherapy medications for patients with cancer. Some commercial insurance companies will permit these medications to be continued. Hospice providers are paid a per diem rate by Medicare and that per diem rate includes covering the expected cost of pain and palliative care medications. Hospice does not cover medications for other co-morbid conditions, such as diabetes and hypertension. These medications are covered by the patient’s co-insurance or Part D plan. However, the hospice physician or pharmacist will generally try to eliminate medications when possible in order to avoid detrimental consequences of poly pharmacy. For example, drugs to prevent osteoporosis or to lower cholesterol are generally no longer necessary when a patient has weeks to live. In my practice, drugs used to treat idiopathic pulmonary fibrosis typically cost about $100,000 per year and Medicare-covered hospices will not pay for these medications as the cost of the medications exceed the total per diem that the hospice receives for all hospice services. Therefore, patients dying of pulmonary fibrosis need to understand that these drugs will usually be discontinued in hospice, similar to chemotherapy drugs for patients with cancer. This can sometimes be tricky when patients are enrolled in hospice for conditions such as end-stage heart failure: are the ACE inhibitor, beta blocker, and diuretic being prescribed to treat the underlying terminal condition or are they being prescribed to relieve shortness of breath? Be sure that there is a clear understanding of what drugs the hospice will discontinue up front so that there are no surprises for the patient later.
Timing the hospice referral. Too many people (and physicians) consider the role of hospice as only providing care in the final days of life. Although this is an important role, hospice is also designed to give patients the best quality of life in the time that they have left. Hospice services such as physical therapy, occupational therapy, speech therapy, and dietician counseling can greatly improve a terminally ill patient’s quality of life in the weeks and months before death. In addition, durable medical equipment provided through hospice can improve the comfort and safety of the patient’s home environment. Simple items such as bedside commodes, shower seats, hospital beds, and oxygen concentrators can be invaluable to terminally ill patients and their families. I can’t remember ever referring patients to hospice too early but I have referred them to hospice too late. In the United States, 50% of hospice patients die within 3 weeks of enrollment and one third die within 1 week of enrollment. These patients do not get the full benefit of hospice. Ideally, hospice referral should be made when you estimate that the patient’s life expectancy is about 6 months. If the patient rallies and improves or stabilizes during that time, then hospice care can be put on hold for a period of time.
Set patient expectations. The proximate cause of death in patients with cancer, COPD, dementia, or idiopathic pulmonary fibrosis is often not the underlying terminal condition but instead an infection, such as pneumonia or urinary infection. When discussing hospice referral with a terminally ill patient, it is important to discuss how patients die with a specific disease so that family members do not panic and call the emergency squad when a dying patient develops a cough and fever in their final days. For example, patients with lung cancer do not all die exactly the same; some will gradually become comatose and die but others will suddenly have a pulmonary embolism, a cardiac arrhythmia, pneumonia, or a stroke. Patients and family members often have preconceived ideas about how people die from movies and TV and if the patient’s condition does not match those ideas, then it can cause confusion and fear.
Palliative medicine consultation can help. Physicians specializing in palliative medicine are often affiliated with hospice organizations but they can do much, much more. They can often provide counseling and treatment long before a patient’s disease advances to having only a 6-month life expectancy. Palliative medicine specialists can also help patients and families understand hospice and help with the timing of hospice referral. There is more to palliative medicine than just pain management.
Referring a patient to hospice is not about giving up on the patient. It is about redirecting care from curative intent to palliative intent. Not all hospice organizations are equal and the best hospice provider for one patient may not be the best for a different patient.
April 27, 2023