In a recent N.Y. Times article (https://www.nytimes.com/2019/09/03/well/live/is-dying-at-home-overrated.html), a palliative care doctor made the argument that many patients and caregivers underestimate the burdens of helping someone die at home. They may not understand that, as patients get closer to death, the care they need increases. They make need help getting dressed, getting to the bathroom or to a chair by the TV. Ultimately, they may not be able to leave the bed at all and may be unconscious much of the time, especially if they are in a lot of pain.
Physical homecare is expensive, often running $40 an hour or more for the simplest kind of help, and there is usually a minimum number of hours you required to pay for each day. An in-home aid can easily cost $150 a day, plus the cost of a hospital bed rental and supplies like diapers, oxygen, bandages, laundry, etc. and the fuss of feeding and comforting visitors. Home hospice care may provide several hours of nursing a week as well as the supplies and medicines the patient will need, but hospice does not provide daily physical help at home.
A good alternative to home care is a stand-alone hospice, where patients can receive palliative care and psychological counseling, but such places are few and far between. A Hospice facility can be a wonderful place for the patient and family to spend end of life, but it is pricey, sometimes as high as $400-$500 a day, and only patients who agree to forgo all curative treatment can be admitted. This requirement was based on the effort to makes hospice less expensive, but it makes less and less sense as time goes on and the line between symptom relief and curative treatments becomes blurred (https://www.nytimes.com/2019/09/03/well/live/is-dying-at-home-overrated.html). Perhaps admission should be more about what kind of treatment patients need and less on what it costs.
At home, caregivers often face flare-ups in pain and other symptoms that they are ill-equipped to handle, like intense pain or difficulty breathing. Most home hospice care does not include intravenous delivery of pain medication (which is the most effective), and hospice nurses are not available in the middle of the night, except, perhaps, by phone. At the same time, hospice units in hospitals often close because of the restrictions imposed by Medicare on curative treatment, making them less appealing to those who want to continue treatment alongside palliative care.
Trying to meet the needs of the dying can be complicated by the presence of young children in the home, or the arrival of guests who want to say good-bye. Families in the midst of their own grief may feel called upon to deal with the reactions of visitors who fall apart on the way out the door. This issue is especially likely when a younger adults die and their children become helpless bystanders. Children too often take too much responsibility for the well-being of their parents even feeling like they failed when the parent dies. In the hospital or hospice, an abundance of professional helpers can ease their concerns.
None-the-less, over the last few years, more people have now chosen to die at home than in a hospital https://www.aarp.org/health/conditions-treatments/info-2019/more-dying-at-home-than-hospital.html) and research has shown that families experience easier grief and patients are more satisfied when they die at home. So what can you do to make the situation as “doable” as possible?
- Expect that the effort to help someone to die at home will be exhausting, both emotionally and physically.
- Ask for help. You may not feel like cooking or cleaning while you are caring for someone full-time. Friends are often eager and ready to help with any mundane tasks, but caregivers are notorious for not asking. Get over your embarrassment and reach out!
- Engage a home hospice service, either non-profit or for profit, who will send a nurse once or twice a week to check the patient’s vitals and medications, administer specialty care, and advise caregivers on the progress of the disease. Home caregivers should not try to manage dying at home without professional assistance.
- Put one of your family members or friends in charge of communication. When someone is dying, there are often incessant phone calls and emails from people seeking information or trying to help you organize and survive your experience. Have an email and phone list handy and instruct the communicator about what you want to say and have them answer any follow-up questions.
- Be prepared to put your life on hold. You will need to take a leave or vacation. Caregiving for a dying patient is a full-time job unless you can afford for someone to be there physically day and night.
- And probably most important, be sure that you take good care of yourself. Be in touch with a counselor or join one of the many on-line groups for caregivers. Hospices often offer free services for caregivers and bereavement counseling after the patient has died. Be sure you eat well, get exercise and rest when you can. Meditation, prayer and daily rituals like warm baths or back rubs can make all the difference.
As my yoga teacher one told me “You should be taking care of others from what runs over your cup, not from the dregs at the bottom.”