As a caregiver, you face numerous challenges in deciding on the best and most appropriate care for your loved one. It is human nature to work towards recovery and rehabilitation after an injury or coping with a chronic medical disease.
One of the hardest decisions to make is when you, as a caregiver, and your loved one choose to accept comfort care over aggressive treatment. The term hospice care is probably familiar to you. Hospice care can greatly benefit you as a caregiver and the person you are caring for, but how do you know it is time for hospice care? Transitioning to comfort care is a very personal decision, and we can help you through the process.
Through the years, hospice has gained respect as an ethical and humane source of care for people at the end of their life. It is not unusual for caregivers to believe that hospice hastens death or that it means that their loved one will die soon. In fact, some people live longer on hospice, and a few recover to the point where they can go off hospice. It is true that the requirement for hospice is certification from a physician that your loved one has a terminal condition likely to end in death in six months. Starting hospice sooner rather than later provides more time for relief from suffering and focuses on improving quality of life. Hospice:
Day to day care on hospice is provided where the patient is, whether it is at home, assisted living, or even in the hospital. At home, the level of care will vary to some extent based on the patient’s needs but generally speaking, you can expect a nurse to come in several times a week and an aide 3-4 times a week for a short time to help with activities of daily living. A nurse is on call 24 hours a day and will come when needed. In general, on hospice, you would not seek any treatment for your terminal condition and going to the hospital could violate the hospice agreement.
Hospice is fully covered under Medicare, Medicare Advantage plans, Medicaid, and most private insurance. The professional services themselves are reimbursed by insurance, but the patient may have to pay for additional medical equipment and supplies.
This is where things can get very complicated. As people become more and more disabled due to their terminal condition, their care needs may increase. But hospice will only provide the services dictated under insurance, which can leave families having to fill in those gaps of care. Most families choose to fill in where Hospice can’t or hire private caregivers or a combination of both. For example, if your loved one needs assistance getting out of bed or a chair every day, Hospice cannot provide that level of care.
Over time families have accepted and turned to hospice more than they did in the past. Hospice is not an irrevocable decision. You and your loved one can decide at any time to go off hospice. If your loved one improves and chooses to pursue active recovery, they have the right to do so. Some people start with palliative care and then transition to hospice.
Hospice care acknowledges and supports a person’s decision to focus on the quality of life while coping with a terminal condition. You can help as a caregiver by following these steps:
Acceptance of the end of life is a uniquely emotional and spiritual journey. Knowing what to focus on and how to honor your loved one’s wishes will make the experience one that you both can respect.
Amanda Lambert is a nationally certified Care Manager and a member of The Aging Life Care Association. She has 25+ years oof experience working with elders