Knowing when to say when: a family’s guide to hospice
It can be challenging to know when it’s time for hospice. Hospice begins with an honest conversation between families, patients, and their physicians. They need to evaluate the disease process, the patient’s symptoms, and, lastly, the expected course of the illness. Medicare, which pays for hospice in the majority of cases, has its own criteria that tell them who is eligible.
But how do you know it’s time for hospice? When should that honest conversation begin?
Determining the disease process: patient and physician
Disease progression has three basic stages: 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 and cover all of the costs for hospice care and treatment.
But predicting the amount of time a person has left 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. (Americanstarbuzz) For these reasons, no matter how sick a person is, it is likely their doctor will present a treatment plan, however tentative.
But doctors, nurses, caregivers and family need to involve the patient as much as possible to determine what’s truly best for their care. Patients need to consider the following when faced with disease progression and potential treatment options:
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. That’s why it’s imperative that patients ultimately decide what is important to them and how they want their lives to proceed.
How do you know when it’s time for hospice?
When diseases enter advanced stages, it’s time to start having conversations about hospice. But without detailed knowledge of disease progression—or having a single symptom to indicate that a person is ready to transition—knowing when to say when can seem impossible.
Doctors might find it hard to be fully open on the subject of disease progression. Maybe they are hopeful a new treatment will turn things around or afraid families will feel like they have failed. But to make the right decision, families need them to be frank. Once families fully understand where their loved ones are in the process, they can judge whether hospice is the best choice for them.
There are signs that accompany advancing health challenges that are easy to spot. While they don’t necessarily imply that a patient’s health is in permanent decline, they afford families opportunities to have more informed discussions about patient prognosis.
Individually, none of the following symptoms are a sign that the worst is about to happen. However, taken together, they indicate a patient’s physical and mental condition and help families know when it’s time for hospice.
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. Consequently, infections become more common, accompanied by flu, nausea, and fever on a regular basis.
But infections might also be caused by the weakening of the body. As muscles shrink, lung capacity is reduced, leading to recurrent bouts of pneumonia. Weakened muscles also cause incontinence, resulting in urinary tract infections, especially amongst female patients.
As the body declines, people get hurt more often. Balance, coordination, and reaction times deteriorate, so they cannot stop themselves from falling; these may also be indications of greater issues of concern.
Blood pressure can become compromised if the heart is not pumping blood out to muscles fast enough. Pressure injuries develop as well, as lack of movement and blood flow leads to rashes and even bedsores.
Recurrent visits to the ER
Patients who are unable to fight off an infection on their own have to rely on emergency medical services for their continued health and safety. Hospitals will do everything they can to help, but if a patient keeps returning over and over again, it is a sign their condition is getting worse.
Shortness of breath
In the final stages of life, breathing becomes difficult. This may 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.
Hospice workers are trained to deal with this level of suffering, sometimes to the point where they restore the person’s ability to function and possibly even keep fighting. Every hospice team supports patients who want to fight, but for patients who feel that fighting will not lead to a better outcome, families should be open to pursuing palliative options.
Confusion and hallucinations
Dementia and Alzheimer’s can trigger sudden behavioral changes. When people do not understand what is going on, they become angry, aggressive, combative, or act out inappropriately. They might even see things that are not there, from loved ones lost to ghostly apparitions. These issues are often exacerbated, or even caused, by chronic pain and infections.