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

As people age over time, we tend to accumulate more health problems. For some, 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 your family’s ability to access your room, 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 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. If you can, compare prices and consider different options to reduce cost, especially chronic care facilities. You should choose which option is best, but try to avoid paying for more care than is necessary.

Comparing Locations of Care

In-Home Care with Support Services

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

While many of us would prefer to die at home, only about a third actually do. Women, younger people, and 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 those you love, can be a more peaceful and dignified experience than dying in a hospital or nursing home. 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 may not fit or be permitted into a hospital or nursing home room.
  • Hospice prefers to deliver palliative care at home with an attending nurse and will provide enough assistance to make caring for you at home manageable. When you make arrangements with hospice beforehand, your family will be asked to  contact a hospice nurse when you die. They will confirm the absence of vital signs, and follow your instructions for burial arrangements. 
    • 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 provided by hospice caregivers, which can be exhausting.
  • They may be required to perform complex treatments they are not trained or prepared to do.
  • They may be upset to see you in pain, respiratory distress, or displaying other disturbing physical responses that they cannot manage effectively. 
  • 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/or possibly modifications to your home. Home Modifications serve two purposes: to prevent home accidents and make it easier for you to maintain your ability to move around your space as your mobility 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 your 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 near 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 communicate;
  • 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.

Coordinate with people who are able to keep up with food supplies, pick up your medication, and ensure 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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