The Truth about End-of-Life Care

When a loved one is critically ill, hearing that it's time for hospice care can be devastating news. On top of the emotional upheaval of coping with a terminal illness, you may be unsure what hospice care really is - and believe it's just an indication your loved one will likely pass away.

Yet the time your loved one spends in hospice care doesn't have to be sad - for anyone. In fact, says Toni Norman, the senior director of hospice operations for Brookdale Senior Living, hospice can be a deeply rewarding time of great comfort for patients and their families.

"Hospice care is not about waiting for someone to die, and that's unfortunately a very common misconception," Norman says. "The goal of hospice is to provide to a patient, who has a life-limiting illness, the physical comfort and medical care they need to stay in their home for as long as possible, while at the same time supporting their caregivers. The hospice team helps families by educating, supporting and identifying any needs they have, ranging from chaplain support to finding mortuaries and veteran benefits."

The decision to begin hospice care is a communal one, with the patient, caregivers, loved ones and medical professionals contributing to the dialogue. "A terminal diagnosis from a doctor usually begins the process of seeking hospice care," Norman says. "Also, as a family member's health begins to decline due to illness, conversations about end-of-life care are proactive and compassionate."

Hospice care providers often encounter common misconceptions about hospice care. Norman offers the truth behind some mistaken beliefs:

• Hospice is for the last few weeks of life. The hospice Medicare benefit is for the last six months, if the disease follows its normal course. "Most people who enter hospice have done so because they've received a diagnosis of a life-limiting illness," Norman says. "But people who enter hospice often live longer, and with a better quality of life, than terminally ill people who do not go into hospice. Many are even able to come off hospice service if their condition improves."

• Hospice means giving up. Hospice is actually a commitment to a high level of care for a loved one. "It means making them as comfortable and safe as possible so they may enjoy time with their loved ones for as long as possible," Norman says.

• Patients are heavily medicated. Patients receive medication under strict physician guidelines, and caregivers closely monitor comfort care protocols so each patient's pain and symptoms are uniquely managed.

• Hospice patients can no longer see their doctors. Patients can continue to see any of their previous doctors. Rather than taking anything away, hospice adds a layer of medical support.

• Hospice care ends when a patient dies. Because hospice cares for the patient's caregivers and loved ones as well as the patient, hospice team members continue their support for 13 months after the patient passes away. The hospice team provides grief support for the families and will continue to work with them to address any lingering questions, and to help identify their needs.

"The hospice team is comprised of the assigned physician and nurses to provide the direct medical care to the patient, while a chaplain, social worker and bereavement counselor provide additional support and education to families and caregivers," Norman says.

Hospice ideally occurs in a patient's home, whether that's a personal residence or assisted living community. It is a Medicare-reimbursed benefit, and most private insurance providers do also cover some hospice costs.

"End-of-life care isn't just about taking pain medications to relieve symptoms until death," Norman says. "It helps people gain emotional strength and carry on with daily life, while improving the quality of life. The goal is to help patients and their families make every remaining moment as comfortable and enriching as possible."