A question that was posed to me by a dear friend whose wife was dying from a brain tumor had been floating around in my brain for months. Knowing that I had been a hospice volunteer for 23 years, he wanted to know,
“How do I find a good hospice? There are at least five in my area. How do I tell the difference?”
I had no answers for him at the time, even though I immediately recognized the importance of being able to offer some guidance to the many others who would most certainly pose this question in the future.
I know from hard experience what few in this country outside of the hospice field are aware of: there are extraordinary hospices and there are not-so-good hospices, with the latter being a forgiving description. My father was a victim of the latter. More often than not, what separates the good from the not-so-good is their funding status: most good hospices are non-profit, while many of the others are for-profit. While this is not a cut-and-dried way to distinguish between them, it can be a starting point. A for-profit hospice may substitute cheaper drugs for medication which may be more costly, but is also much more effective. A for-profit hospice may stint on support for their medical-care team, which leaves their staff feeling burnt-out and emotionally incapable of being present for their patients.
So, how to make a discerning choice before signing on with a hospice? After a very enlightening conversation with the executive director of the hospice I’ve been a part of for 25 years, I’ve come up with a list of questions that we both feel could be invaluable tools in this process.
You will be talking with an intake person, who is the initial liason between you and their hospice organization. Typically, this person will not be a part of the day-to-day care of your loved one. If the liason person is taken aback by the questions below, if they are clearly unable or unwilling to answer, if they become defensive: these are clear signs that you may be talking to a not-so-good hospice organization.
1. What percentage of your nurses are CHPN certified?
Certified Hospice and Palliative Care Nurse is a title that is granted by a national organization after very rigorous testing. It is valid for four years and then the nurse must take the test again for re-certification. A new nurse or one with little hospice experience would not be able to pass this test.
2. How many patients is each of your full-time nurses responsible for?
Currently the nurses at out hospice each have 7 patients; 10 would be the max for our organization. Experience has shown us that when the nurses are given a heavier load than 10 patients, the kind of “as much time as it takes” care is compromised.
I have volunteered with a hospice which puts a time limit on the length of each nursing visit and have observed that personalized care suffers greatly. The nurse spends her scant allotted time “taking vitals”, which gives zero time for the delicate emotional/spiritual issues which are such an important part of good hospice care. Over-emphasis on the body at a time when the patient is struggling to understand that they are much more than their bodies has a tendency to de-humanize their situation.
3. How do you provide support to your staff? How do you support their personal grief work?
Hospice nurses who work in an environment without a strong support system are prone to “burn-out.” A nurse with burn-out tends to pull back from her patients, to close her heart in a misguided attempt to protect herself against grief. This is unfortunately apparent to her patients and is counterproductive to open, honest communication and trust.
Experiencing the death of patients you have bonded with and knowing that this will happen over and over again as long as you remain a hospice nurse requires not only a close and supportive work environment but also a strong spirituality.
Some of the types of support that a good hospice might offer include training in contemplative care and regular staff memorial services within the hospice for patients who have died in the past several months.
If the intake person seems confused by this question or appears to not know what you are talking about, this is not a good indicator for the emotional health of the nurses who work for that organization.
4. Do you train your staff in contemplative care? On a regular basis?
This is a follow-up to the previous question. Our hospice has an ongoing contemplative care program which is mandatory for all nurses. This is completely non-denominational and has no affiliation with any organized religious belief system. The aim of this program is to foster the kind of genuine presence in the nurses that inspires great patient confidence and trust.
Contemplative care training helps nurses to become comfortable with silence and gives them tools for creating the kind of inner calm within themselves that can have such a profoundly healing effect upon both the patient and family.
5. Is staff available 24 hours a day, 7 days a week if there is a patient or family need?
Be alert for weasel-words in the response you receive. You should be told that there is an R.N. on call 24 hours a day who is familiar with your particular case. An extraordinary hospice will do their utmost to send a nurse to your home, if you so request, if your loved one begins the dying process after hours.
6. Do you have a drug formulary? Are the medications my loved one is currently taking covered? What is the approval process if the patient’s medications are not on your list of covered drugs?
I would highly recommend having a comprehensive list of your loved one’s current medications with you when you interview the hospice intake person. It is important to understand that all drugs that are directly related to the patient’s diagnosis are supposed to be covered when he/she enters hospice care.
What may not be covered are any medications that have been prescribed with curative intent. Chemotherapy drugs are not covered, but radiation treatments for pain relief may be covered. Palliative treatments to ease pain are considered and reviewed on a case-by-case basis. If the patient’s doctors have already suggested that such treatments may be helpful for pain relief, now is the time to discuss whether their costs will be covered by this hospice.
During this question and answer period, your impression of how your questions are received is just as important as the answers as to which drugs are going to be covered. These are perfectly reasonable questions, so if you feel that you are meeting with an adversarial response, this is a warning sign. Less than impeccable hospices or those which place profit above that which is best for the patient may balk at expensive drugs. If the medications your loved one is taking are working well for them, this is not a time when you want to potentially disrupt equilibrium by allowing the substitution of cheaper drugs for the sake of improving the hospice’s profit margin.
A really good hospice such as the one I have been working with will be able to provide thoughtful, detailed and compassionate answers to each of these questions. They will be grateful to provide the answers because they reflect so well on the wonderful work of their organization. Plus, you will undoubtedly be told that you are the very first person to ever pose such questions.
I am really excited to be able to offer a way for prospective hospice patients and their families to make an informed choice. I do so in the fervent hope that the standards for truly skilled and compassionate hospice care in this country will be raised to a higher level. To the best of my knowledge, this information is not available anywhere else; only those who provide the very highest form of hospice care and have considered these issues very carefully have the background to even formulate these discerning questions.
May all who are facing their death or the death of a loved one benefit…