Years ago, a colleague remarked to me, “I have appointments to see three pediatricians today.”
I exclaimed, “I didn’t realize you could do that before the baby is born!...But it makes sense to try to find your ‘best fit’ doctor, someone whom you’d feel comfortable turning to for guidance when you're attempting something so important as raising another human being.”
Recently, I realized that as a palliative care physician, I often give patients similar advice. “Hospice agencies differ from each other - in resources, staffing, priorities. Some may be more flexible in working with you, and others less so. If you have the time and energy to do so, consider ‘interviewing’ several hospice agencies to find your ‘best fit,’ and put the name of that agency in your back pocket for if and when you were to ever need them. It’ll likely be better than scrambling for a hospice agency in a time of crisis.”
We dedicate much care into researching the “best fit” pediatrician before we even have a need for them. Perhaps if we were to do the same in searching for the “best fit” hospice, before we were to have the absolute need for hospice support, we may feel a little less overwhelmed and anxious and a little more in control as we attempt something as important as supporting our loved one during some of their most vulnerable periods (as part of that research, consider reading Post 56: Debunking Common Myths about Hospice - Part 1 of 2 and Post 57: Debunking Common Myths about Hospice - Part 2 of 2).
Because we often avoid talking about hospice and their services, we tend to view every agency as interchangeable, akin to expecting each franchise to provide the same service. But hospices are not like franchises.
Hospices may serve a similar objective - to provide support for patients and family members as they attempt to make the best of what remaining time a patient with limited prognosis may have – but how they choose to interpret the rules established by the Medicare Hospice Benefit and how they provide services may greatly differ.
(I discuss core similarities among hospices in Post 2: Five Major Ways Palliative Care Differs from Hospice.)
Anyone can Google hospice agencies’ contact information and ask to speak with the hospice liaison (or "representative"). No referral from a primary care physician or specialist is required for a patient assessment by hospice (nor is it needed for you to “interview” hospice in the process).
The following are questions to consider asking hospice liaisons as you meet with them (and most liaisons would like likely answer these questions before you even ask). It is an excerpt from the appendix of my book Own Your Care: A Family Guide to Navigating Complex Illness, Changing Health, or Unexpected Prognosis:
QUESTIONS TO CONSIDER ASKING ABOUT THE MEDICAL AND PHYSICAL SUPPORT THE HOSPICE TEAM WILL PROVIDE:
• Who are the different types of hospice team members who come to the home, and exactly what can each do?
• On average, how often does each hospice team member come to the home? On average, how long does each of these visits last?
• How involved is the hospice physician in overseeing my (or my loved one’s) medical care? How often do you communicate with my (or my loved one’s) primary care physician (PCP)?
• What medication changes are you going to recommend?
• What should I be expecting with regard to my (or my loved one’s) symptoms and behavior?
• What is the average response time of the nurse getting to the home if we were to need help at home during a symptoms crisis, both during standard business hours and during nonbusiness hours?
• What happens if my (or my loved one’s) severe symptoms (such as severe agitation, pain, nausea) cannot be controlled at home even with the hospice nurse’s help?
• What is the process of reporting our concerns with a hospice team member? Would we be able to get someone to replace a hospice team member if our personalities were not a good fit?
• If things were not working out with your hospice agency, what is the process to either disenroll from your agency or to transfer to a different hospice agency?
• What makes your hospice agency stand out?
QUESTIONS TO CONSIDER ASKING ABOUT THE CAREGIVER SUPPORT THE HOSPICE TEAM WILL PROVIDE:
• What kind of caregiving respite can you offer and how often?
• How can you help me if I am having trouble providing the caregiving my loved one needs?
• What medication, equipment, and services do you financially cover? What will I have to purchase myself?
QUESTIONS TO CONSIDER ASKING ABOUT OVERALL SUPPORT THE HOSPICE TEAM WILL PROVIDE FOR THE PATIENT AND FAMILY:
• How can you help me talk to my children (or other family members) about what is going on with me (or my loved one)? How can you help me explain who you are?
• Whom can I speak with if I need someone to talk things through or just to get something off my chest?
• How can you help me complete necessary paperwork, that is, get my affairs in order?
• What kind of emotional and spiritual support do you have to offer my family?
• How can you help my family process what is going on and grieve in a healthy way?
Since the publication of my book, another question I would consider adding is, "Is the medical director local or remote? How accessible are they if a major situation were to arise?"
Hospices may also address specific questions differently. Example questions may pertain to whether a particular hospice would consider continuing short term artificial nutrition through a feeding tube, provide IV (intravenous) fluids if this were to clearly improve alertness, organize efforts to drain excess fluid from lungs or the abdomen (known as “thoracentesis” or “paracentesis”) for comfort, or continue dialysis in very select circumstances.
If your loved one’s strength, energy, appetite, and all around day-to-day living are being significantly impacted by their health or medical condition, and you are wondering what it may look like to transition to prioritizing quality of life and comfort rather than disease treatments (read Post 23: When to Consider Hospice Support - Example #1, Post 25: When to Consider Hospice Support - Example #2, and Post 27: When to Consider Hospice Support - Example #3), consider dedicating as much intensity researching and attempting to prepare for the ending of a life as we might for the beginning of a life.