(Hint: Grab Your Free Printable Here to Help You with Your Interviews)
As a field RN Case Manager, I met with many families and patients during their intake process and rarely had any of them shopped around prior to choosing their hospice organization. Most expressed that they chose our organization based on word-of-mouth recommendations from friends, family or their physician and they were surprised when I informed them that they had more than one option. While I hope that we were able to provide services that met their expectations, I still want families to know that choosing their hospice is a personal decision and that it’s okay to meet with more than one before signing on.
If you find yourself in a situation where you require the services of a hospice organization, I highly recommend that you schedule a Meet & Greet, otherwise known as an Informational Session, with 3 Hospice agencies in your area. While it’s easy to fall in love with the first agency, don’t make a decision until you’ve met with them all. Give each a fair chance to present their services to you and answer your questions. I caution you though, don’t meet with more than three unless you find that each was absolutely a no-go for you. More than 3 agencies are likely available to meet with you, but multiple meetings can become overwhelming, time consuming and confusing.
When to Schedule the Informational Session
When it comes to Hospice services, sooner is always better. An informational session is not the start of Hospice service, but allows you to gather information. If you suspect that someone in your family needs or may need Hospice in the future, it’s a good idea to get the information as soon as you can, and document your choice much like you would any other end-of-life wishes.
I’ve provided a useful guide HERE for determining factors that may lead to a person utilizing Hospice care.
Scheduling your meet & greet sessions early on will ensure that when you make the decision to officially sign on with Hospice, you’ll feel at ease knowing that you’ve already made a choice. If like most people, the question of “which Hospice” doesn’t come up until it’s absolutely in need, that’s okay too! Just make the call as soon as you know!
How to Schedule an Informational Session
Scheduling an informational session should be an easy process. Simply locate the phone number of the local agency that you’re considering (via an internet search or by calling 211 on your telephone), and give them a call. Explain that you’re interested in an informational session and are considering signing up for Hospice care. If the agency is not receptive to your request in an immediate fashion, cross that option off of your list. Typically, informational sessions can be scheduled within a day or even faster if your situation is urgent. Once you have communicated your wish, expect the agency staff to offer to meet you at your home, at the patient’s home, or at a public location that you deem acceptable. This process should be fairly straightforward and can be a good indication of how other processes within the organization go.
What Questions to Ask in Your Informational Session
Depending on the agencies that you speak with you may find some differences in the services that they provide. While Medicare requires that certain services be offered (nursing, physician oversight, some volunteer services), there are others that are optional (certain types of volunteer services). Additionally, Medicare requirements leave room for organizations to see patients more or less often (one may have nurses see you weekly, another may be bi-weekly). It’s important to cover these topics in your session, but to also ask about additional services and determine which are most important to you.
I’m providing a free printable here for you to use as a guide. Print one for each session, labeling each with the name and contact info for each organization that you’re interviewing. I highly recommend that you use a highlighter ahead of time to highlight the topics that are most important to you and your family.
How to use the guide effectively
SERVICES:
Each Hospice organization will be required by Medicare to provide certain services such as physician and nursing services. However, each also takes the liberty to add additional services based on the needs and preferences of their patients. While one company may offer pet therapy to their patients, another may forego the therapy dogs in lieu of more traditional services such as bereavement counseling. While the list provided is not exhaustive, feel free to cross out and add in services as you see fit. Examples of some less common services that may be offered are Reiki therapy, Acupuncture, aromatherapies, and Chiropractic care. As you navigate your visit with the informational representative, check off each service on the sheet and indicate the standard frequency (e.g. 1x weekly, 2x monthly).
DAY BY DAY:
How often will I/my loved one be seen?
Most hospices will require an RN to visit the patient at least every other week. However, I recommend that you find one with a weekly requirement at minimum. Typically, stable patients with few needs are seen weekly while those with more severe symptoms are seen more frequently. A quality Hospice organization will see a patient every day if their symptoms are unmanaged or they are close to death.
You/your loved one has needs that extend beyond nursing and these should be discussed at length during this session. If you feel that a home health aide to assist with showering, feeding, cleaning, etc would be helpful, speak up and make the request. While 2x weekly might be the norm for that organization, you can request as many days as you’d like if the need is there. Also be sure to communicate what days/times work best for you as the aides are often flexible in their scheduling and can work with the families to provide the most convenient care.
Typically, nurses and aides are those who see the patients most often and on a weekly or even daily schedule. While they can make adjustments, bereavement counselors, social workers and spiritual care support typically visit on a bi-weekly or monthly schedule.
For services such as massage therapy, pet therapy, music therapy and similar options, you’ll find a wide array of scheduling options. These staff typically make their own schedule and will work with you on a one-on-one basis to decide if/when to visit.
Physical therapy, occupational therapy and speech therapy are typically reserved for patients who are on home health services and are not offered to those on Hospice care. However, if the goal of these therapies is to ease pain or provide comfort/assistance, they may be an option while on Hospice. If you feel that they are an absolute necessity in your/your loved one’s care plan, ask about them during the meet & greet. Be sure to communicate your thoughts about why you’d like to receive the service, but remain open to alternative therapies that may provide similar relief (such as massage or reiki therapies).
Hospices are required by Medicare to provide volunteer services. This looks different for each Hospice organization, so asking for more information during your Meet & Greet is pertinent. Some hospices primarily use their volunteers for administrative duties and the occasional errand for a patient, while others train their volunteers to spend time with patients and families, sit at the bedside, and perform assistive tasks such as housework or errands. Keep in mind that the volunteers are just that….volunteers. They attend a rigorous training in order to participate and are typically very dependable, but should be treated as a volunteer with thankfulness and gratitude.
COSTS:
For most patients with Medicare, their Hospice services will be covered 100% while other insurance carriers may vary in coverage. Start by confirming your insurance with the Hospice agency and asking about percentage of coverage and expected out of pocket costs.
Each Hospice organization determines what they will cover throughout the course of the patient’s treatment. While you’ll find that most covered/non-covered items are standard, there may be some differences. For instance, maintenance medications for long-term conditions (such as hypercholesterolemia) are often not covered. If a patient is prescribed a medication that is not covered within that Hospice organization, it will either be discontinued, replaced with another medication or the patient will be financially responsible to pay for the medication. In some instances, the insurance company will continue to cover the medication, but this should be confirmed before starting services.
TIP: Be sure to ask if your medications will be delivered, saving you a trip to the pharmacy!
Equipment such as hospital beds, wheelchairs, lift chairs, and oxygen concentrators are typically covered by each Hospice. In addition, all disposable need items such as briefs, pads, wipes, soap, cleanser, gloves, wound care needs and other care items are fully covered and even ordered for delivery by the Hospice.
NOTE: If you or your loved one is utilizing CBD in their current treatment plan, this should be discussed during the informational session as well. At this time the treatments are not commonly paid for or utilized by hospice organizations. If the use of CBD is important to you, definitely ask each hospice about it. Many will list the product of your choosing on your medication list, but will decline to make recommendations pertaining to it or pay for it. Regardless of their stance, it is important to communicate your desire to utilize the treatment, even if it won’t be part of their care plan for you/your loved one.
ADDITIONAL CARE:
The majority of Hospice organizations prioritize services related to death and bereavement. This means that in addition to physical comfort, they provide emotional and planning support. Granting final wishes, assisting with funeral planning and providing bereavement counseling for the family for up to a year after the loss of a loved one are common. Ask about and take advantage of these services, even if you aren’t sure that you need them.
OTHER:
Do Not Resuscitate (DNR) orders are typically NOT required by Hospice organizations, but are encouraged. It’s important to ask questions regarding a DNR if you’re unfamiliar with the consequences of having/not having one and decide early on if you/your loved one will choose to sign it.
While most Hospice organizations will notify your PCP of your decision to choose Hospice, they will sometimes stop most communication there, besides notifications. If you’re particularly close to your PCP and want to keep them in the loop of your care, this needs to be communicated clearly during this session and moving forward.
My hope is that this guide is a help to you and your loved ones as you journey down the road to Hospice. As always, feel free to reach out to me via email at Tammy@HelpfulHospiceNurse.com if you have additional topic ideas or questions that you’d like to see covered.