Before a baby is born, planning around the baby’s life begins. The parents prepare for the baby by creating a registry. Friends plan and host a baby shower. Family helps decorate the nursery. As the baby grows, the parents teach the baby, now a child, how to read. They prepare the child for kindergarten, then elementary school, then middle school, and then high school. The child, now a young adult, decides on a trade school versus entering the work force directly after high school versus college, and if college is selected, the young adults selects a major, and prepares to earn a degree. Then the young adult applies for and accepts a job, decides to get married, and chooses when to start a family. He or she then decides how many children to have and how to raise those children.
We spend so much of our life preparing and planning—so why should it be any different when making a hospice decision? Ideally, from the start of a diagnosis of a life-limiting illness, people should begin planning their goals and priorities with their physician. By having these conversations early, the person with a life-limiting illness can be fully involved in planning and making decisions regarding their wishes before the stress of a medical crisis.
Hospice is a continuation of care that shifts the goals of the patient from curative to comfort. When you or a loved one has a life-limiting illness and medical treatment is no longer effective, the doctor may refer you to hospice care. It should not be seen as a last resort but rather as an opportunity to focus on managing pain and other symptoms to find relief. This approach lets you dedicate your attention to what truly matters: living the rest of your life to the fullest.
A study by the National Palliative Care Organization found that patients who spent their final days on hospice reported having a better life experience than those who spent the end of their lives in intensive care. The researchers found that the patient’s choices often influenced the end-of-life care they got, which is why it is so important for people to plan for hospice, long before the need arises.
So, when should you make the hospice decision? Talk to your physician about signs and symptoms to consider prior to electing hospice care. Frequent hospitalizations, frequent infections, a decline in functional status, and an increase in uncontrollable symptoms or pain can all be indicators. Decide what you wish to do when treatment is no longer effective. Consider the benefits of managing symptoms from home rather than frequent visits to the physician or hospital. Consider the benefit of having a team of specialists available to you in your home—from a registered nurse to an aide, your doctor, a medical director, a social worker, and a chaplain. Consider access to your hospice team by phone 24 hours a day, 7 days a week, 365 days a year, where you could call your team if you had a question or a medical need. Consider the benefits of having medications related to your diagnosis and medical equipment made available to you in your home. These are all resources included in the Medicare hospice benefit, at no cost to the patient or their family.