Planning the future for your loved ones

Choosing the Location of Chronic and End-of-Life Care

As people  age over time we  accumulate more and more health problems. For others those health issues happen earlier due to a serious illness or accident. Sometimes these problems are too much for you and/or your family to manage at home and you may need to either have professional caretakers come to your home or be admitted to a chronic care facility for medical care and/or help with personal care.

  • If you are 65 years old or older, you have a 70% chance of needing some form of assistance with your care before you die. If you need care during that time, you have a 67% chance of needing long-term help, including a 20% chance of needing it for more than 5 years.
  • The most appropriate choice will vary depending on the degree of illness, level of care needed, and the quality of the services.
  • A healthcare provider will help choose which option is best for your situation.
  • Although you will have a say in the choice, you will need a healthcare provider’s order and each option will have requirements that must be met to be accepted.  

This is a much different decision as you approach the end of your life and are considering your preference for the setting where you want your death to occur. The decision is not about the medical care necessary to improve or maintain your health or the personal care that cannot be provided at home, it’s about how you and your loved ones want to experience your death.

  • Although you may still need a healthcare provider’s order, this is a more intimately personal decision than one about chronic care services.
  • You’ll want to choose a location you’re confident will comply with your advance directives, avoid unnecessary care, and maintain dignity. 
    • While you are cognitively aware, any decision about medical treatment is yours and must be complied with.
    • When you are no longer able to make your own decisions, hospitals and nursing homes try to honor advance directives, but unwanted  care, including IVs and attempts at resuscitation, may happen.
    • In hospital settings, your family may be tempted to request different types of care.
  • You’ll want to consider access, since most medical care and assisted living facilities will have specific visiting hours, unless the facility will waive the restriction as you near the end of your life.

When seeking chronic or palliative care it’s important to consider your level of comfort with the caregivers, ability to communicate well with them, and the level of care they can provide. You must also consider your needs and the cleanliness of the living situation, whether it is your home or a care facility. This will apply to your family if they are making the decision.

A significant proportion of the money spent at the end-of-life goes to healthcare. Therefore, it is important to compare prices and consider different options to reduce cost, especially chronic care facilities. You should choose which option is best, but don’t pay for more care than is necessary.

Comparing Locations of Care

ConcernIn-home CareHospice Facility Nursing HomeHospital
Cost – most covered by Medicare and other insurances$ – Coverage may not include all the cost of home renovations to improve accessibility$$ – Not all Hospice organizations have an inpatient facility$$$ – Must be admitted within 100 days of hospital stay to be covered$$$$ – May be limited coverage if only admitted for hospice care
Setting– A controlled and peaceful setting
– Available for family to visit at any time
– Home modifications make be needed to stay there
– Quiet and controlled, but unfamiliar setting
– Built for easy accessibility
– Unfamiliar and busy setting that may not be able to provide a peaceful place to die
– Limited visiting hours
– Built for easy accessibility
– Unfamiliar and hectic setting that may not be able to provide a peaceful place to die
– Limited visiting hours
-Built for easy accessibility
PrivacyTotalPrivacy may be difficultPrivacy may be very difficultPrivacy may be very difficult
Care– Palliative care specialists help provide comfort care
– Treatment of acute symptoms not available
– No significant chance of unneeded care
– Palliative care specialists help provide comfort care
– Treatment of acute symptoms may be available
– No significant
chance of unneeded care
– Almost constant care available
– Treatment of acute symptoms probably available
– Chance of unneeded care
– Small chance of unwanted CPR
– Almost constant care at all levels available
– Treatment of acute symptoms always available
– More chance of IVs, monitors and unneeded care
– 38% chance of unwanted resuscitation
Caretakers– Family members become responsible for any care not done by hospice
– Palliative care specialists come to your home
– Caretakers will become familiar
– Most care is done by hospice staff
– Palliative care specialists
– Some caretakers may be unfamiliar
– Most care is done by nursing home staff
– Nurses with little palliative care training
– Unfamiliar caretakers
– Allows hospice to be involved
– All care is done by hospital staff
– Nurses with little palliative care training
– Physicians on site
– Unfamiliar caretakers
– Allows hospice to be involved
DecisionsAll medical decisions are yoursAll medical decisions are yours Nurses may make medical decisions for you if you are unablePhysicians or nurses may make medical decisions for you if you are unable

In-Home Care with Support Services

Hospitals and long-term care facilities may be needed for many situations where specific treatment is necessary, but most people with a terminal illness need only comfort care. With some accommodations, home visits, and support services, even those who are approaching the end of their life, this care can often take place in their own homes.

While many of us would prefer to die at home, about a third actually do. Women, younger people, and some minority groups are less likely to die at home. People who live further from a hospital are more likely to die at home. There are many reasons to choose to die at home.

  • Dying in a familiar setting, especially when surrounded by loved ones, can be a more peaceful and dignified experience than dying in a hospital or nursing home where you are more likely to have IVs and other tubes connected, be surrounded by medical caretakers, monitors, and anxious family members.
  • You will have control over the setting and it is much more likely that your wishes will be carried out when you are at home.
  • Cultural and spiritual needs related to death are easier to observe at home, especially if it involves gatherings of family members that would not fit into a hospital or nursing home room.
  • Hospice prefers to deliver palliative care at home with an attending nurse or doctor and will provide enough assistance to make caring for you at home manageable.
  • If you make arrangements with hospice beforehand, your family can contact a  nurse or doctor after you die and will be less likely to call 911. This person will be able to pronounce death.
  • It is less expensive.
    • Hospice and other medical professionals, such as visiting nurses and home health aides, can provide care which ranges from $10 to $40 per hour.
    • Most outpatient services and home care professionals are covered by Medicare and other insurances.
    • People needing constant supervision may do well with adult day care, rather than 24/7 residence.

Drawbacks to dying at home are usually related to the amount of responsibility your family must take.

  • Family members become responsible for any medical and personal care not done by hospice caregivers, which can exhaust them if it is too much.
  • They may be required to do complex treatments they are not trained or prepared to do.
  • It may be upsetting to see you in pain, respiratory distress, or other physical responses that can happen right before death when they are not able to take responsibility to do something about it.
  • Your family may need to be responsible for arrangements to remove your body, although hospice can help with this.
  • You may need to make modifications to your home to be able to stay there.
Accommodations That May Be Needed

In order to make it easier for everyone when you make the decision to die at home, or “age in place,” you will need some help, like that available through hospice care, and possibly modifications to your home. 

Home Modifications

Home Modifications serve two purposes: to try and prevent home accidents and make it easier for you to maintain your ability to move around as your abilities may decline.

  • General home modifications if you are weak or unsteady may include:
    • installing railings on stairs or hallways; and/or
    • replacing knobs with lever handles on doors and faucets.
  • Bedroom modifications may include:
    • moving you bedroom to the ground floor; and/or
    • replacing your bed with a hospital bed with bed rails.
  • Bathroom modifications for when you are weak and at risk for falls may include:
    • installing railings in the bathroom, including the shower;
    • installing a bench or seat in the shower;
    • installing slip-resistant bathroom flooring;
    • raising the height of the toilet seat for easier access; and/or
    • installing handrails on a toilet.
  • Modifications you may need if you are physically disabled:
    • installing a stairlift or wheelchair lift on stairways;
    • installing ramps;
    • widening doorways to accommodate a wheelchair; and/or
    • installing a wheelchair-accessible shower stall.

Support Services

When considering home care with support services, consider if the caregiver:

  • speaks English or other appropriate language well enough so you and others involved in your care can easily understand each other;
  • has enough experience with your health situation;
  • will adapt their caregiving style to your needs;
  • has the qualifications and certifications to provide the medical care you need;
  • is physically strong enough to support you if it is necessary while bathing, dressing, using the toilet, and other physical activities; and/or
  • has a valid driver’s license and good driving record if providing transportation services.

If there will be more than one caregiver working together, consider how you will manage division of labor and the social dynamics between caregivers.

Make sure someone is able to keep up with food supplies, pick up your medication, and make sure there are other necessary medical supplies, such as bandages, heat pads, wraps, and antibacterial cleansers.

Checklist: Questions To Consider When Choosing In-Home Care. everplans website.

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