Hospice care is a misunderstood and underutilized benefit for loved ones and their families at the end of life. There are misconceptions about the purpose of hospice and precisely what happens when someone chooses hospice over continued treatment for an illness. Due to these misconceptions, many families wait until their loved one is close to death before deciding on hospice.
Jump ahead to these sections:
- Does Being in Hospice Always Mean Someone Dies?
- How Long Does Someone in Hospice Typically Live?
- How Does Hospice Prepare Patients for Their Death?
- How Does Hospice Prepare Someone’s Loved Ones for a Hospice Patient’s Death?
One of the misconceptions about hospice is that it somehow hastens death. Hospice is essentially comfort care that supports the patient’s desire to forgo treatment for their terminal illness. Hospice provides support and care to anyone who qualifies, as long as a physician certifies that they have approximately six months to live. But, as we shall see, there is no way to predict how long someone will live and the length of time on hospice varies depending on the individual’s circumstances.
Does Being in Hospice Always Mean Someone Dies?
Being on hospice does not mean that the person always dies. Some people go on hospice and then recover to the extent that they decide to go off hospice and pursue treatment. It is not unusual for some patients to go on and off of hospice for months or even years. But in most cases, since someone has a terminal illness they will die from that illness.
How Long Does Someone in Hospice Typically Live?
According to the National Hospice and Palliative Care Organization, 53.8% of Medicare beneficiaries received hospice care for 30 days or less in 2018, and a quarter received hospice services for seven days or less. As hospice becomes more familiar to patients and their families, there is some indication that people are starting hospice earlier. Let’s look at some factors that determine how long someone is on hospice.
Time of admission to hospice
The longer someone waits to begin hospice for a terminal condition, the less time they usually have to live. Understandably, some patients want to try a treatment or a palliative care approach until they have exhausted their options. It is hard to accept death as a normal and inevitable consequence of one’s condition.
A patient’s diagnosis will influence how long they live on hospice. End-stage lung disease, cancer, congestive heart failure, Alzheimer’s disease, kidney failure, or other chronic medical conditions can affect life span. Other people may have a terminal diagnosis but live a relatively long time due to the prolonged nature of the illness.
One person can have a diagnosis of cancer, and depending on the type and when it was detected, they may have successful treatment and a favorable prognosis. Someone else may have late-stage cancer that has metastasized and limited treatment options. To qualify for hospice, you must give up treatment for that terminal condition.
Personal decisions about death
Even on hospice, some people continue to fight to live. Others accept and are ready to die. When someone is ready to die they may have little interest in eating and drinking which can affect how long someone lives.
Age is a factor in how long someone is on hospice before they die, but not a determinant. A patient who is in their 90’s may not live as long as someone in their 50’s depending on the condition that qualifies them for hospice. Someone who has age-related frailty and a terminal condition may not live long.
How Does Hospice Prepare Patients for Their Death?
The ideas, feelings, and preparations for death vary among individuals depending on their cultural, spiritual, and religious beliefs. There could be a range of emotions and fears as a loved one and family prepare for the end of life. Hospice staff prepares families and their loved ones by supporting and honoring traditions and beliefs. The philosophy of hospice is grounded in respect for the individual.
Support for spiritual beliefs
Support for spiritual or religious beliefs is an integral part of hospice. Some patients will take great comfort in knowing what is ahead after dying, and others may be filled with doubt. Every hospice company has a non-denominational chaplain whose role is to support the patient regardless of personal belief. If a patient is frightened and overwhelmed, the chaplain’s job is to offer support and counsel to help relieve anxiety.
The process of pain relief
A patient on hospice may have questions about the alleviation of their pain. Many pain medications can cause extreme sedation, nausea, and other side effects. Relieving pain is a goal of hospice but collaborating with the patient to determine the best and most comfortable pain medication possible. If the patient doesn’t like one medication, hospice nurses and doctors can try another one.
Comfort care options
Pain relief is not the only goal of hospice. Comfort care can mean many things to many people. Along with pain relief, music therapy or massage is available to someone who wants it. Or, within reason, if there is something the patient needs to make them more comfortable, hospice will help make that possible.
Listening for concerns
Listening to the patient is an intangible but important part of hospice care. The nurse is the primary point of contact for hospice, and it is their job to listen to the patient. The patient is at the center of care, and by listening to their concerns, hospice staff can respond appropriately. If the patient has a sudden change in their physical or emotional comfort level, hospice will respond.
Preparing for death
No one knows how each person will die, but hospice staff can help the patient prepare for death. Some patients will feel comfortable and calm about the process of dying, and others will have significant anxiety about what will happen. Reassurance and education about what happens at the end of life can help the patient prepare.
How Does Hospice Prepare Someone’s Loved Ones for a Hospice Patient’s Death?
In some cases, the families of the dying patient have more stress than the patient themselves. Losing a loved one brings up complex feelings and emotions. Family members may have differing opinions about hospice or what happens after death. There could be disagreements about medications, burial plans, or what constitutes comfort care.
Hospice has a responsibility to family members as much as they do to the dying patient. They make every effort to support and educate so that process is comfortable for everyone.
Education about the dying process
Families often have to come from a great distance to be with a dying loved one. Understandably people want to know when to arrive if they would like to be with their loved one either at the time of death or during a period where they can have a coherent conversation.
No one can predict the exact moment when someone will die, but the hospice nurse can educate the family about the physical and cognitive symptoms that indicate death is near.
When someone is dying, some of the symptoms can be disturbing or confusing. The hospice nurse can reassure the family that these symptoms are a normal part of the dying process.
When someone is on hospice, other medical issues can arise such as a need for oxygen, an infection. It is possible and sometimes preferable to treat these conditions if they are not the hospice qualifying medical problem.
Each patient will have an individual preference on whether they want treatment for any other issue, even something as simple as high blood pressure. It should be up to the patient to decide about what brings them comfort. If they prefer not to have treatment, their wishes should be respected.
Limitations of hospice
Patients and families can be surprised when they find out that hospice care is not 24-hour care. Hospice nurses are available 24 hours for emergencies, but staffing is generally limited to several nurse visits a week with an aide for one hour three to seven days a week. That leaves a significant amount of time that your loved one may need help. Either the family, assisted living staff, or private caregivers may need to fill in the gaps in care.
Family members who are providing care to a loved one who is dying can become stressed and overwhelmed. Hospice under Medicare and other insurance offer respite care for the patient in a hospice-approved facility for up to 5 days to give family members a break. If the family is stressed, it can negatively affect the person who is dying.
When a loved one is dying, there is grief for the impending death and for the person’s suffering. Family members may not be ready for their loved one’s death or they may have unresolved feelings, regrets, or guilt. Grief counseling is a part of hospice before, during, and after death. The social worker with the hospice company is available for grief counseling for anyone connected to the dying patient.
Planning for after death
At the beginning of the hospice journey, the social worker or nurse will talk with the family about their after-death wishes for their loved one. This includes burial and funeral plans, and any religious or cultural rituals. How to handle the body of someone who has died and how long the family would like to remain with their loved one are all important considerations.
How Long Are People Usually in Hospice Before They Die?
Hospice is a valuable resource that has the flexibility to adapt to the unique needs and desires of patients and their families. Few people are comfortable thinking about how long someone is on hospice before they die, but the process of honoring and respecting the patient and family is what hospice offers. Reading books about hospice can help you or your family prepare for this inevitable transition.