Most conversations about sickness center around healing: searching for a cure, fixing what is broken, treating the patient. However, sometimes a diagnosis of a terminal illness can mean that it is time to focus on quality of life, treating symptoms to ensure the patient is cared for to the fullest extent possible. This is what hospice care focuses on: giving relief when possible, to allow the patient to enjoy their remaining time with family, friends, and loved ones.
The idea of treating the terminally ill, those who do not have an expectation of recovery, has been around for centuries. There are records of organizations and facilities dedicated to this cause since the Crusades. Modern hospice care in the US began in the 1960s, growing slowly until the 1980s when it became a common choice for patients facing terminal cancer diagnoses. Today, many people still associate the word hospice with cancer based on their memories of visiting family members during the 1980s and 1990s. However, hospice providers now offer services for all terminal illnesses and serve people at every stage of life, including specialized centers for children and young adults. The term hospice has become standard over the years, referring to facilities or home-based services for the terminally ill. Because of this, many people believe that hospice is the same everywhere, and there is no need to choose a certain provider. In fact, hospice can vary widely depending on the provider and the services required. Some may only require periodic visits from members of a care team to check in and assist caregivers, while others may need 24-hour care from a team of skilled professionals. Hospice services can also include medication to relieve symptoms or pain, medical equipment, physical, occupational, speech, and/or psychological therapy, dietary counseling, short-term inpatient, short-term caregiving to give other caregivers breaks, and grief counseling for both the patient and their loved ones. Most people receive hospice as part of their Medicare, Medicaid, or Department of Veterans Affairs coverage. Hospice organizations generally provide services based on the need of the patient, rather than their ability to pay. To qualify for hospice, the patient must have received a terminal diagnosis from a physician, which must be affirmed by a second physician, which is expected to be life-ending in six months or less. In a critical situation, physicians, social workers, elder lawyers, and others can help patients and their families to find a hospice that satisfies their needs. Choosing a hospice provider can also be integrated into Life Care Planning. This can happen at any stage of life but is especially important for seniors or anyone who receives a diagnosis which may end in terminal illness. By planning ahead, you can take the time to research various providers to find the organization which fits your vision for care. You can also have conversations with family members and loved ones, especially anyone who will be responsible for making decisions on your behalf if you become unable, such as your Healthcare Power of Attorney, to ensure they understand your wishes and are willing to abide by your Living Will. There are important considerations when choosing a hospice provider, whether you need the services now or ensuring they are available if you need them in the future. “When researching hospice care, it’s important to compare agencies to determine which will make the most sense for the individual situation. The Medicare Hospice benefit is guideline driven. Agencies determine how often the nurse and the certified nursing aide will visit. It is also important to ask what supplies and the equipment the hospice will provide. For obvious reasons, the more a hospice is involved the greater the success of managing any symptoms. It’s vital to research multiple hospice organizations, if your time allows. It is also important to consider when you would want to involve hospice in your care. Waiting too long to involve hospice can cause people to lose the opportunity to choose the best provider. Once you have chosen a preferred hospice organization, leave a pamphlet or other information for the facility in the file containing your other estate planning documents, and inform your Healthcare Power of Attorney or other planned caregivers about your choice. Hunt notes, “It is good to think about what is available before you need care.” Choosing to go into hospice is often considered as a decision to be made shortly before death and often is involved with feelings of hopelessness and giving up. However, by proactively engaging in Hospice benefits well beyond end of life, the true benefits of hospice can be realized: Peace and comfort, not just medication.