One of the biggest misconceptions about hospice is that it is only for people who are actively dying or for whom death is imminent. While hospice is not for people who are expected to live for years, it is often appropriate for people who are declining and failing to thrive.  Hospice care can make a considerable difference for those with months to live. The focus, as opposed to normal medical care, is less about recovery and treating chronic conditions and more about enhancing the quality of life. Research confirms that patients on hospice report better pain control, more satisfaction with their care, and fewer deaths in the hospital or intensive care units than other people with similarly short life expectancies.

Hospice providers must offer routine care in patients’ homes, including seniors who reside in assisted living or nursing homes; continuous care at home for people with severe symptoms such as pain or breathing problems; inpatient respite for families that cannot always care for a loved one; and general inpatient care for medical crises.

Typically, a nurse must be on-site in the home for at least eight hours a day, helping to bring symptoms under control for at least one to three days. Respite care, on the other hand, has a maximum limit of five days. Some hospices have their own inpatient facilities, which are not solely for people who are ready to die.  While they are not intended to be a permanent home or care facility, like a nursing home, they may be appropriate to address acute situations of pain and allow the patient to be sent back to their home.

Intermittent Care At Home

According to the National Hospice and Palliative Care Organization, routine care in the patient’s home accounts for approximately 94% of hospice care.

While services will vary depending on a patient’s needs, home care will typically involve at least one weekly visit from a nurse and a couple of visits from aides for up to 90 minutes. If a patient and family so choose, they can have volunteers visit, along with social works and chaplains if they wish to address any spiritual and practical concerns.

Hospices provide the medications needed to address the underlying illness, as well as medical equipment such as hospital beds, commodes, wheelchairs, walkers and oxygen.

Some families and patients might not realize that hospice staff will not be in the home every day, around the clock.  Whether in an assisted living environment or at home, patients or their families need to make sure that an adequate level of support exists for the patient. In nursing homes, it is common for aides to visit less often, since more help is available on-site.

Self-Referrals Are Allowed

Anyone can ask for a consultation from a hospice. If requested, a nurse will make a visit and complete a preliminary assessment to determine if a person would qualify for hospice services.  To be admitted, two physicians — the hospice physician and the patient’s primary care physician — need to confirm that the person’s life expectancy is six months or less, based on the predictable trajectory of the patient’s underlying illness. Recertification may be required at regular intervals.

You Choose Your Physician

If on hospice, you can keep your primary care physician, or you can choose to have a hospice physician be in charge of your medical care. These arrangements require close collaboration. The physician is generally responsible for altering the treatment plan, while hospice is responsible for implementing that plan and providing clear instructions to the patient and family.

Concerns About Medications

There’s a misconception that someone in hospice is going to be medicated to a highly sedated state.  The reality is the goal is to increase quality wakefulness. Managing these medications is where a good hospice provides real value to the patient and family. Since they’re responsible for administering pain medications, family caregivers are on the front-line.  Training and patience are vital. Usually, doses of pain relievers such as morphine start out very small to see how much the patient needs for pain relief and to see how much they can tolerate. Because most hospice stays are short — with the average length being 17 days — and because the diversion of painkillers from people’s homes is a risk, doctors have begun writing prescriptions for a week or two at a time. If any concerns about safety exist, hospices can have a lockbox set up for medications sent to the home.

Discharges Are Possible

Estimating when someone is going to die is not a science, and each year hundreds of thousands of hospice patients end up living longer than doctors anticipated. If physicians document a continued decline in these hospice patients — for instance, worsening pain or a noticeable advance in their illness — they might be able to recertify them for ongoing hospice care. But if the patient is considered stable, they will be discharged. Hospices are required to give the patient or family a Notice of Medicare Non-Coverage at least two days before being discharged, and if the patient or family feels that coverage should be continued, expedited appeals can be filed. No regulatory requirements are governing what hospices should do to facilitate live discharges. Some hospices spend weeks helping patients make arrangements to receive ongoing care, while others offer minimal help.

At The Very End

During their last two days of life, almost 1 in 8 hospice patients don’t get visits from professional staff, leaving families without the support they need. In response, some hospices have created programs specifically geared towards people who have a very short time left to live.  In those cases, there is often more hands-on management and a team with fewer patients to handle the end of life care more attentively.

So hospice has different services for different needs of different patients.  The most important thing is that hospice is a helpful benefit that can improve comfort and quality of life when life expectancy appears finite.

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