A couple of years ago I wrote an article, “What does good hospice care look like?” In the article I created this list of questions for families to use to help identify a “good” hospice. I think it is time to repost a portion of the blog.
1. Do you have primary care nursing? Will we have the same nurse, home health aide, social worker, and chaplain for each hospice visit?
*You want the consistency and comfort of knowing the same person.
*This is becoming harder to achieve because fewer and fewer hospices are providing primary nursing.
2. Are the Inpatient services (hospital or Hospice House) offered only for symptom and pain management? Can you stay under private pay when the Medicare time limit for inpatient runs out?
*If you cannot do private pay and the stay in a facility is only for symptom and pain management it means the hospital or Hospice House stay is only for five days, NOT until death occurs.
*This is an area of confusion. It is an important question to answer so that 5 or so days after admission to a Hospice House or hospital you aren’t suddenly having to decide to move a loved one to a nursing facility or home.
3. How often and how long are regular home or nursing facility visits?
* Once a week should be the minimum if life expectancy is months
* Two to three times a week if life expectancy is weeks
* Every day or even twice a day if death is expected within days.
*How long are the visits?
* In the home
* Forty-five minutes to ninety minutes is an average.
* A few visits may be shorter, a few may be longer.
* You don’t want ten to fifteen minute visits. That’s not hospice!
* In a nursing facility
* It depends if the family is present and how responsive the patient is.
* If no family is present and the patient responsive, thirty to forty-five minutes
4. Do you come to the house when death occurs in the home?
*It is a comfort to have the hospice nurse come to the house when death occurs.
*The guidance and support as well as the assistance with the funeral home is important.
5. How often do the Social Worker and Chaplain visit after the initial visit?
* It may be only once unless you ask for them to return.
* If you want them, how often do they visit?
6. Don’t be concerned about what you won’t need.
* A lot of services offered just don’t matter.
* Social Work and Chaplain services can help guide you through this experience.
*Use their offerings.
* Know that Chaplains are not based on religious denominations.
* Their focus is spiritual comfort no matter a person’s belief or non belief.
7. Be careful of hospice if dementia is the only cause of approaching death.
* Dementia is too unpredictable, unless not eating is the issue and a feeding tube is not the chosen option.
* You may be discharged from the program in a few months because the decline of dementia is so unpredictable.
8. Will hospice make an initial visit to begin services on a weekend or after 5 PM during the week?
* Time is our enemy.
* Disease progression doesn’t just occur during the nine to five work day.
Questions 1 and 8 are hard to compromise on but may still be difficult to find. Questions 3 through 7 are just good basic information. You may not find every question answered the way you want it answered, but you will know more thoroughly what kind of service you will be receiving. Call several hospices with your questions to narrow your choices.
There have been many changes in hospice care since it began. Some for the better, some not so much. What I am suggesting as representing a “good” hospice is becoming harder to find. My hope is that by setting the standard high, and having families ask for that level of care, all hospices will rise to the quality expected.
Something More about How Do I Pick A Good Hospice?
I suggest that you view NEW RULES for End of Life Care and read the two booklets that are part of the kit. It is the most comprehensive education on how to care for someone as they approach end of life, which is different than caring for someone who will get better. It details what to expect to see in the months, weeks, days and hours before death from old age or disease.