How to Know When It's Time for End of Life Care
Aging can be a difficult process to accept for many older adults. You may notice that as your parents age they associate illness with loss of independence or becoming a burden on their children or loved ones. This may be why they don’t always tell you how they’re really feeling.
It may be up to you to recognize the signs of declining health and the need for a different type of care. Understanding potential signs that the end may be near helps reduce anxiety and allows you to honor your aging parents' wishes.
It’s also important to know that anyone can refer someone for hospice or palliative care to improve quality of life for themselves or their parents or loved one.
Palliative care is for people of any age and any stage of illness while curative treatment is ongoing and can begin at time of diagnosis. This type of specialized medical care helps control pain, manage symptoms, and reduce stress while your parents or loved one receives the treatment they need for their illness. It does its best work when added to the patient’s care plan as early in the disease diagnosis or treatment as possible.
Hospice care is for those living with a serious illness whose current prognosis indicates a life expectancy of six months or less.
When you hear the word “hospice,” what is your first thought? Is it “an improved life” or “pain relief” or “free care.” As evidenced by the number of people who access hospice care far too late in their journey or not at all, those phrases are typically not at the top of the list.
In fact, 25% of Medicare patients who received hospice in 2019 only received Hospice care for five days or less. But if the patient is eligible, they can receive specialized care, medications, medical equipment and supplies related to the terminal illness months earlier. So how do you know when it’s time for hospice?
When to Consider End of Life Care
People are eligible for hospice care when a physician determines that life expectancy is six months or less, provided a terminal illness runs its normal course. If a hospice patient continues to live six months after participation then the physician would review and reclassify. Following the physician’s determination, family members or friends can also refer the person to hospice care, or the person can choose to enter hospice on his or her own.
The decision to enter hospice care is based on many factors, and it is important to understand those factors so that you can clearly identify when the time is right.
SIGNS IT MAY BE TIME FOR END OF LIFE CARE
1.Treatment is no longer working and/or they no longer desire aggressive intervention.
If your aging parents have a terminal illness and their goals include comfort, time with loved ones, and improved quality of life, hospice care may be the answer. hospice care focuses on pain relief and symptom management rather than curing the illness.
"Oftentimes, the parent begins mentioning subtle things to their families and caregivers," says Kelley Roy, RN, Clinical Director. "It's important to begin paying attention to the subtlest of comments and then openly discussing the person’s wishes and what matters to them. Keywords we often hear that are cues for further conversation include, 'I'm tired' or 'I just want one day without pain or to sleep comfortably.’”
Some of the most common illnesses in hospice care are:
- Heart disease
- Lung disease
- Alzheimer’s disease and other forms of dementia
- Liver disease
- Kidney failure
- ALS (amyotrophic lateral sclerosis)
2. Their symptoms are getting harder to manage.
Research shows pain increases in the last two years of life, becoming most intense in the last four months. Uncontrolled pain can lead to other issues, including shortness of breath, restlessness and anxiety. If you notice an increase in pain or other difficult symptoms such as nausea, vomiting, trouble swallowing or pressure ulcers that don’t improve with treatment, hospice care may help.
3. They’re visiting the doctor or hospital more frequently.
Use of the emergency department typically increases as people age, particularly among older adults over 75. Multiple doctor or hospital visits in the last six months can be an important sign of declining health.
4. They need a lot more help than they used to.
Your aging parents may no longer be able to do personal care activities as they once had, such as bathing, getting dressed or eating. Or perhaps they were once able to move about independently and now they are using a wheelchair or walker. If they’re not feeling well most of the time or they stopped doing things they used to do, these are signs they may benefit from hospice services.
5. They often seem confused or restless.
Older adults at the end of life may feel confused or agitated, even combative at times. They may not know where they are or what’s happening around them. Some people perceive things that aren’t there (hallucinations) or have false beliefs (delusions) that they are much stronger than they are or that people are trying to harm them.
6. They’re less able to communicate.
Decreased circulation, hearing and vision problems, and other issues may affect your aging parents’ speech and ability to follow conversations. As a result, they may start to withdraw from activities and people they love.
7. They don’t have much appetite or are losing weight for no apparent reason.
Check your aging parents’ refrigerator and observe their eating habits to see what they’re eating and how much. Reduced appetite and unexplained weight loss can be signs the body is slowing down or isn’t digesting food properly. For example, someone who has been on tube feedings for years may now complain of stomach upset. Or perhaps they aren’t eating much, or they don’t feel hungry but still try to force themselves to eat.
8. They sleep much of the time.
As part of the body’s process of slowing down, your aging parents may spend more time sleeping. You may notice that they rest in a chair or bed most of the day.
9. You’re feeling stressed and overwhelmed as a senior caretaker.
Your stress levels escalate as your aging parents need more help. It is an act of love to admit you need caregiver support and use all the resources available to you to provide the best care for your parents.
At its most basic, hospice care should be considered when an illness has progressed to the point that there is no cure. Pain management and comfort become the primary focus for patients rather than treatment.
What Can Hospice Do?
The hospice team will work with your parents and family to determine the goals about the kind of care that will be provided. Your mom or dad does not lose control of his/her choices when it comes to the care he or she will receive.
Hospice can provide care in a hospital setting, a senior community or the patient’s home. Depending upon the hospice program, care is provided by a team of professionals. For example, the team could include:
- Nurses/case managers
- Hospice aide
- Social workers
- Hospice Medical Director
- Bereavement counselors
Timing is Important
The full benefits of hospice cannot be realized in the last few days of a terminal illness. If you qualify for hospice or your loved one qualifies, there is no reason to hesitate accessing the care it provides. Should the patient recover from the illness or wish to resume curative treatment, he or she is free to leave the program.
Entering hospice is not a sign of defeat or resignation. In fact, it has been shown that hospice patients live longer than people with a terminal illness who choose not to enter hospice.
But it’s not just the length of life that can be increased, it is also the improvement in the quality of life that hospice and end of life care provides its patients, and the support family members receive from it.
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