The idea behind the end of life is not easy to comprehend because no one knows for certain when the end of life can occur. We can guess, and professionals can weigh in with valuable opinions about how long someone has to live, but we never know until it happens. Uncertainty makes it challenging to know what to do and when to do it.
Jump ahead to these sections:
- What to Consider When Choosing End-of-Life Care for You or a Loved One
- Main Types of End-of-Life Care in the US
As the family member or friend of a loved one who is expected to die, your first concerns may probably have to do with keeping the person pain-free and comfortable. But, along with those considerations are the tough decisions about when to stop medical interventions and treatment. When is it time to relinquish life-saving methods and let nature take its course?
Fortunately, end-of-life care is evolving to meet the needs and preferences of people who are dying. There is no one-size-fits-all approach, and the flexibility of options can be comforting to both patient and family members. We will explore the various options for end-of-life care so you and your family can make the best choices.
What to Consider When Choosing End-of-Life Care for You or a Loved One
Now the hard part. How do you know when to shift the focus towards supportive comfort care for you or a loved one? To start, talk with friends and family and your healthcare providers about your options. No decision is irreversible, so knowing that you can change your mind can free you to try something different. Here are some things to consider when choosing end-of-life care.
Consider your or your loved one’s personal preference. Some people want to fight and continue to pursue treatment up until they die. The consequence of this decision might be increasing pain and discomfort if there is no likelihood that medical treatment will affect the outcome.
That said, people have the right to make their own decisions about care. Personal preference also involves where the person feels most comfortable. Is it at home? Is it in assisted care or a hospice residence? As someone’s condition changes, so might their preferences.
How long someone has to live
If time is short due to a terminal illness or age-related complications, you may decide to call on hospice immediately for support and care resources. Even if it appears that someone potentially has months left to live, hospice or palliative care might be a wise decision depending on someone’s age and disabilities.
Most people wait too long to get the support they need, so starting hospice sooner rather than later can have benefits. For example, it might be impractical and uncomfortable to transport someone to outpatient visits, which have no long-term value. Instead, it makes more sense to provide comfort care in the home or other place of residence.
Someone’s care needs can increase slowly over time or suddenly due to an accident, illness, or the exacerbation of an existing condition. The family may begin providing increased care supplemented by home care or home health for a loved one.
At some point however, these efforts might not be enough, and it is time to consider hospice or another end-of-life care option. Family caregivers may need relief and support and can no longer continue hands-on care at the same level that they have been.
Cost may not seem like a consideration when choosing end-of-life care, but there is a big difference in options.
For example, if you or a loved one live at home and then decide to move to assisted living or hire in-home care, these options could get expensive. It might make more sense to use hospice, which is covered by insurance, and then augment care with family or home care to fill the gaps.
Pain control and comfort
Sometimes at the end of life, pain can become a larger obstacle to a peaceful transition to death. Hospice and palliative care specialize in treating pain.
If you or your loved one is at the end of their life and in a lot of pain, managing that discomfort humanely and responsibly should take priority. Assisted living or other typical senior care settings are not equipped or trained to manage pain.
Availability of options
You may live in a community where few options will limit your ability to compare companies and services. Deciding what to do could be difficult and may cause your family to take on more caregiver duties than they would otherwise. Having fewer options may also mean that you or your loved one is far from friends and family.
Main Types of End-of-Life Care in the US
End-of-life care can take place anywhere a person lives. In some cases, people choose a hospice program in a residential community whose sole purpose is to provide end-of-life care. But most people receive end-of-life care at home, in assisted living, or in residential care homes. Let’s review the main types of end-of-life care in the US.
1. Palliative care
People often confuse palliative and hospice care for a good reason. They are very similar in their philosophy and intent, but they have distinct differences as well. Hospice care is considered a type of palliative care.
- Palliative care is for people who have a significant illness, need pain relief and management of their symptoms, and have a life expectancy of over six months. Examples of these conditions include heart failure, chronic obstructive pulmonary disease, Parkinson’s disease, cancer, dementia, and kidney failure.
- With palliative care, you can receive comfort care and pain management and choose treatment if you want it.
- The goal of palliative care is to improve a person’s quality of life through illness by addressing pain, depression, nausea, anxiety, fatigue, sleep problems, and other symptoms.
- Palliative care emphasizes support for the family, spiritual guidance, teaching care techniques, and referrals to other resources.
- Palliative care takes place along with curative care and focuses on what the patient wants and needs.
- Palliative care is holistic in that it provides spiritual, emotional, social, and functional support.
2. Hospice care
Hospice care is the gold standard of care for people at the end of life. Patients and families often struggle with deciding upon hospice care because it means declining curative treatments and hospitalization. Once families decide to initiate hospice, they are usually greatly relieved. It is not unusual for patients to go on and off hospice over long periods of time.
- Hospice is for terminally ill people who a doctor certifies have six months or less to live.
- When a person accepts hospice, they agree to receive symptom management and comfort care with no life-extending treatment.
- Hospice care can benefit families due to regular visits from the hospice team, including the nurse, aides, a social worker, and chaplain. A hospice nurse is available 24 hours a day, seven days a week for emergencies.
- If a hospice patient lives beyond six months, they can continue with hospice as long as they meet the initial eligibility requirements. Some people are on hospice for years.
- Hospice is covered by most insurance and can provide hospital beds, oxygen, pain medication, and other durable medical equipment in the home.
- A person can discontinue hospice at any time their prognosis changes, and they decide to pursue curative options.
- Treatment for breathing difficulties, infections, and some other medical problems is acceptable on hospice. The goal is comfort and quality of life, and if that is achieved by treating minor medical issues, the patient can request those interventions. Treating an infection or assisting someone with breathing is not likely to extend life but does help the patient feel more comfortable.
3. Home care
Home care is usually an add-on service to hospice or palliative care. Hospice and palliative care do not provide 24-hour care, and if you or your loved one has additional care needs, a private caregiver can be a valuable option. Home care has its limits as well, however. Let’s look at how it can help.
- Home care caregivers can run errands, shop and cook meals and do light housekeeping.
- Home care is flexible, and you can contract for as little or as much time as you need.
- Care staff can help with bathing, hygiene, and toileting.
- For someone who has dementia, home care staff can ensure safety by monitoring mobility or wandering. They can also offer much-needed companionship and social stimulation.
- When you need respite, home care can provide relief while you take time away from your loved one.
- Unless you have a long-term care policy, home care will be private pay.
- Home care staff can not administer or prescribe medications, nor can they provide any medical care (except for a few states where care staff can perform minor medical tasks).
4. Long-term care end-of-life options
Although most people state they want to age and die at home, that isn’t always possible. Residential long-term care has its place in end-of-life care because of the amenities and support they offer. In extreme cases, nursing home placement may be the only option if someone’s care needs exceed what any other medical service can provide.
Assisted living can be a good option for families that need a layer of support that they can’t provide at home. Hospice and palliative care can both occur in assisted living. The advantage to assisted living is the meal service, nursing care (although limited), aide care, housekeeping, and other amenities.
You or your loved one might already be in assisted living when you need end-of-life care, or you decide to move there for additional support. Also, the cost of hiring private caregivers could eventually exceed the cost of assisted living, so it makes financial sense to move.
Nursing home care
Most people consider nursing home care a last resort. If you or your loved one needs round-the-clock care from nurses and aides, then nursing home care might be the only option. It is possible that with 24-hour care, you or your loved one may recover to the point at which you can go to assisted living or home with palliative or hospice care.
Fewer and fewer people are dying in hospitals due to other available care options. But, in some cases dying in the hospital is unavoidable. An example will be an unexpected medical event or significant exacerbation of an existing condition where you go to the hospital for treatment.
If it is determined that you are likely to die soon and there is little chance for recovery, you can request hospice at the hospital. It could be too risky or complicated to move you from the hospital to another location.
End-of-Life Care Options for You and Your Family
The end of life is an emotional and distressing time for patients and their loved ones. Having flexible options for support and care can allow everyone the time they need to be together. Understanding your choices can give you and your loved ones the opportunity to make this transition a loving and compassionate one.