Hospice begins with an honest conversation between families, patients, and their physician. They need to evaluate the disease process, the patient’s symptoms, and, finally, the expected course of the illness. Medicare, which pays for hospice in the majority of cases, has its own criteria that tells them who is eligible. But how do you know it’s time for hospice? When should that conversation begin?
What is the Disease Process? Questions for the Patient
There are three ways any disease can progress. Either the patient improves, declines, or plateaus (holds steady). If doctors think the patient is declining so significantly that in six months their health may be seriously compromised, then Medicare can step in. How do you know it is time for hospice? For healthcare organizations, that is the answer.
But predicting the amount of time a person has is not an exact science. Even when things look dire, patients sometimes beat the odds and recover. Moreover, it is rarely the case that a patient has no options. On the contrary, no matter how sick a person is, it is likely their doctor will present a treatment plan, however tentative. Before signing on though, patients need to stop and ask a few questions.
- Will the plan cure the disease or slow it down?
- What is the chance of an effective cure?
- If treatment will slow the disease, by how much?
- How will it affect my quality of life?
- What do I want my life to look like six months from now?
The goal of hospice is not to help people pass away, but to help them live as well as possible in the time they have left. You need to decide what is important to you and how you want your life to proceed. Every hospice team supports patients who want to fight, but if you feel fighting will not lead to a better outcome, then it may be time to look at other options.
How Do You Know It’s Time for Hospice? Signs for the Family
When a disease enters an advanced stage, it may be time to sit down with your loved one and consider the paths open to them. How do you know it’s time for hospice? There is rarely a single symptom that indicates someone is ready, but these are the signs they are drawing close.
When they near the end, people lose weight, normally for one of two reasons. First, the body starts conserving energy. With fewer resources devoted to digestion, appetite collapses and people stop eating.
Second, the body may lose its ability to absorb nutrients, so malnourishment sets in. This process is painless, but also a sign that recovery is unlikely.
Just like the digestive system, the immune system begins to slow down towards the end of life as well. As a consequence, infections become more common. If your loved one is experiencing flu, nausea, and fever on a regular basis, this may be the reason.
However, infections might also be caused by the weakening of the body. As muscles shrink, lung capacity is reduced, leading to reoccurring bouts of pneumonia. Poor muscles also cause incontinence. When people cannot control their bowels, they experience more urinary tract infections, especially women.
As the body declines, people get hurt more often. Balance, coordination, and reaction time deteriorate, so they cannot stop themselves from falling. If your loved one stumbles when they stand up, that may point to an underlying problem as well. Their heart is not pumping blood out to their muscles fast enough, which could indicate their blood pressure is compromised. Pressure injuries develop as well, as lack of movement and blood flow leads to bedsores.
Frequent Trips to the ER
If someone cannot fight off an infection on their own, they will have to rely on emergency medical services for their well-being. Hospitals will do everything they can to help, but if your loved one keeps returning over and over again, it is a sign their condition is getting worse.
Shortness of Breath
When someone is entering the final stages of life, breathing becomes difficult. It might be caused by a chronic condition, such as heart disease or cancer, or the result of a respiratory infection brought on by a bad immune system or waning lung capacity. Either way, if it continues, hospice care may be the solution.
Chronic pain is one of the most distressing symptoms people experience at the end of life. Pain can be localized or general, but it tends to grow steadily worse if the underlying cause cannot be cured. Fortunately, pain can be treated. Hospice workers are trained to deal with this type of suffering, sometimes to the point where they restore the person’s ability to function.
Confusion & Hallucinations
Dementia and Alzheimer’s can trigger sudden behavioral changes. When people do not understand what is going on, they become angry, aggressive, and combative. Sometimes they act in an inappropriate or sexual manner. They might even see things that are not there, such as one of our patients who saw dead people standing in the room with him. These issues are often exacerbated, or even caused, by chronic pain and infections.
How Do You Know It’s Time for Hospice? Feedback from the Doctor
Individually, none of these symptoms are a sign that the worst is about to happen. However, taken together, they indicate the physical and mental condition of your loved one, which is how you know it’s time for hospice.
Doctors might find it hard to be honest about these problems. Maybe they are hopeful a new treatment will turn things around or afraid you will feel like they have failed. But to make the right decision, you need them to be frank about the disease. Is your loved one getting worse? How do they know? What is the prognosis? Once you understand where they are in the process, you can judge whether hospice is the best choice for them.
Jose Escobar is the Hospice Executive for Parentis Health. He works with patients and families across Southern California, providing support and education in order to alleviate the pain and suffering of chronic and terminal illness.