One of the frequently required tasks of my job working for hospice is called the “informative” visit or “informational”. These visits to patients and families are to explain the purpose and intent of hospice and how the services provided by our agency (theoretically by any hospice agency) can benefit a qualifying client and their family. Sometimes, this is a tall order! I often go see clients and families who are set in their mind against our services because they have a misperception of what we do and why we do it. It’s my job, and passion, however, to help them understand their misperception, correct it and make an appropriately educated choice for themselves given their circumstance.
My favorite opening “spiel” is absolutely true and goes like this: “Hospice isn’t (just) about helping you die, the 6-month terminal diagnosis needed to qualify, that’s an educated guess, but no obligation. Hospice at it’s best is about helping you live this time more on your terms! May I explain to you how that works and see if you’d like to try it?”
I intentionally include the issue of the 6-month or less terminal diagnosis pretty quickly as I’ve found my audience either knows about it or will soon hear and I don’t want them thinking I’m hiding prognostic information from them in any way. Medicare Hospice, as well as most commercial hospice coverage requires that it be a “reasonable expectation” that if a patient’s disease runs its “normal course”, they would have 6-months or less to live. The truth is some of my patients come to look at that as a challenge, others relief, and most just for what it is – a look into an imperfect crystal ball that gives us a frame of reference for when it might be a really good idea to take inventory of all our options, priorities, needs and values and think about what we want to use our time for! If you qualify for hospice and outlive your 6 month period, you don’t automatically get voted off the island or “terminated” on the spot, we just keep going, working together to do what’s important to you.
Yes, part of the purpose and intent of hospice services is to provide comfort and education during the active dying process, when utilized earlier and to its full potential, that’s only a tiny part of what hospice services do. The public perception that this is the majority of what we do comes from the way hospice is under-utilized at this time throughout the country. The National Hospice and Palliative Care Organization tracks hospice utilization and reports 2016 statistics to show that 27.9% of patients using Medicare Hospice are only enrolled in hospice care for 1-7 days. With over a quarter of our patient population being served by us for a week or less it’s no wonder people think what we do is help people die! The truth is though, 10.7% of patients come on service and stay from 180-365 days and 9.4% have a length of stay >365 days! (Full 2017 Report Available Here)
So yes, there is a part of hospice where we do prepare patients and families for the physical dying part of the process, and it’s an important part! Sometimes, given the statistics and how we currently work, it is a part we all get hyper-focused on. The intent and full potential of hospice services however is to support people, their family and community in this stage of LIFE. We come in to assist you and your loved one to live with increased comfort, to return time and control by bringing the medical care into the home, assist with defraying the cost of in-home assistive devices which can make daily life easier and provide emotional support through the entire process!
How do we do this? Hospice provides its care through several key areas of coverage:
The Hospice Interdisciplinary Team – it is truly the people who make hospice great. Every Hospice provider is required to offer their clients several key members of this team who make home visits usually approximately 1 hour in length. These include:
- The Hospice Nurse – who depending on your stage of illness and comfort may visit as infrequently as once every 2 weeks (required minimum visit frequency) or as often as daily if needed to maintain comfort and symptom control. Hospice nurses work with patients and family to maintain a patient’s general well-being and also educate patients and family members about how to provide in-home care, potential problems to be aware of and report, how to administer medications, how to cope with changing care needs due to disease progression and many other functions determined by individual needs. The frequency of visits is determined collaboratively at the start of service and can be changed at any time during hospice care if a patient’s needs increase or decrease. Hospice is a collaborative effort! Hospice Nurses coming into the home allow patients to stop going out of the house to multiple doctors appointments, that time and energy is returned to them to use as they desire! The hospice nurses also work with the Hospice Medical Director and a patient’s designated attending physician to coordinate needed changes in care, medications and therapies to keep patients comfortable and needs met, minimizing time patients and families must devote to care-coordination.
- The Hospice Home Health Aid – These are often the incredible people who are our first line of support to clients, our home health aids come into the home often several days a week – and as frequently as daily to assist with activities of daily living. Most people want to maintain their independence and minimize the stress placed on family members by the demands of needing assistance with basic care needs like bathing and grooming. Others prefer that family members not take an active role in certain personal care tasks. The home health aids are available to assist in this area and also provide a level of companionship to our clients! Most hospice agencies attempt to keep a level of consistency with the staff being sent to care for a patient so that rapport can be developed and comfort maintained. While we cannot always assure the same person will be available for every visit, it is a common goal to attempt to provided consistent care with familiar faces whenever possible for the benefit of the client and the staff!
- The Hospice Medical Social Worker – I call them the magic makers, I suspect I couldn’t tell you half of the things that are in these amazing people’s bags of tricks, but I always make sure my hospice families and patients meet with them at least once, so they can explain what they have to offer. Our social workers assist patients and families with everything from improving the home situation for safety, completing necessary paperwork, working out insurance and care-need issues, setting up respite stays, finding additional in-home care help and much much more!
- The Hospice Chaplain – These are incredible individuals who are available to come to the home to provide additional emotional and spiritual support to patients and families. While all members of the hospice interdisciplinary team provide emotional support at some level, the chaplains are some of the best at it!
- The Hospice Volunteers – Our hospice volunteers are non-medically trained staff that comes out to spend time with patients and family. They do not provide direct physical care, but more-so emotional, spiritual and companionship. The specific role of a volunteer may widely vary from case to case, for one they may simply hold space in quiet while a family caregiver runs errands, assuring that a patient is safe and has their needs met, for another client they may go for walks together or play cards or share music, the options are endless!
- The Hospice Medical Director, Hospice Physical Therapist, Hospice Occupational Therapist & Hospice Bereavement Counselor are all valued and important members of the Interdisciplinary team that I won’t further discuss here but you can refer to the NHPCO.org website for further information or send me any questions you have about these roles.
Along with the people, hospice also helps through this time by covering several other key areas:
- Hospice Covers the Expense of basic DME – Durable Medical Equipment – things like hospital beds, wheelchairs, walkers, rollators, commodes, gel cushions, oxygen concentrators and tubing are covered 100% by the medicare hospice benefit and delivered right to the home. They are usually rented and paid for by the hospice agency you go through and certain equipment such as stair lifts, motorized wheelchairs and other more specialized equipment may not be covered or fully covered depending on details, required need and the agency administering the hospice benefit.
- Hospice Covers your medications related to the diagnosis for which you come on hospice – meaning if you come on service for a cancer – any medications you take related to that diagnosis that are not considered “curative medications” would be covered by the hospice agency and usually are sent right to your doorstep in several weeks supply at a time. (I promise to write more about this another time as this is a topic that requires more information and discussion)
- Hospice will cover *some* supplies – most notably incontinence supplies such as pull-up briefs and pads. The specific covered supplies are dictated by each individual hospice provider and should be discussed with them at admission and ongoing as care needs change.
As you can see, the people are a huge part of what makes hospice such a benefit! All of these people available to come into your home and help care for you, limiting the need to go out (which may be a more difficult thing due to symptoms of advancing disease). It doesn’t mean you can’t go out! Signing on to hospice does not require you to lay down and die, I have read our contracts through and through and it’s nowhere in there, I assure you! The other benefits of medication coverage, DME and supplies are often *more* helpful as patients progress in their disease process and medical needs increase.
Hospice is here to provide a well-rounded array of options to free up your energy and time so you can use them for whatever YOU choose! While you LIVE! Studies even show that patients that choose a palliative care model like hospice, often live longer! Signing on to hospice services earlier with the idea that hospice is there to help you live is exactly what we should be looking to do! Better yet, research supports that this palliative care approach increases quality of life if not quantity as well. A 2007 study by the National Hospice and Palliative Care Organization showed an average 29-day greater longevity in patient’s receiving hospice care. The science only confirms what I see time and time again in my practice, there’s more magic to be had focusing on the quality in your time than just getting more time. (JAMA– Palliative Care Research) (NHPCO Research)
I don’t see giving up in that at all, I see taking control, steering your ship, reclaiming your time and being the captain of your own destiny for as long as possible. I often inform my clients on admission to hospice services that they are now the King or Queen and the decisions about how we proceed are theirs and their family – just consider me a royal advisor. It gets me a chuckle, but it’s true! I’ve even handed out a few crowns and tiaras over the years! So if you’re considering your eligibility for one of these thrones, I hope this information has been helpful, if not – I remain as always available as a royal advisor to answer more questions.
I do hope that you consider, for yourself or someone you love, that hospice has a lot to offer and is invaluable as a support system, your local hospice should be invested in breaking down the misconceptions of what we do and the idea that it’s all about the dying, and if they’re not, keep looking! You can shop around for hospice services and you should! Whatever you do, I encourage you not to try to walk this road alone, it’s a difficult one, and everyone needs someone to cast a little light, laughter and love along the way, and don’t forget many hands always makes the load lighter!
Other Good Articles & Resources on How Hospice Works:
- Don’t Be Afraid: Hospice Isn’t a Death Sentence – Daily Caring
- Hospice – It Is Not About Giving Up – Vitas
- Repeat After Me: Hospice Means More Care, Not Less – Huffington Post
- Does Choosing Hospice Mean Giving Up? – Compassion & Choices
- Consumer Reports – A Beautiful Death – Paul Scheier’s Story
- Frontline – Dr. Atul Guwande: Hope Is Not A Plan: When Dr.’s & Patients Talk Death