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.

Although 60%-70% 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, while 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 or doctor 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.