Ask the Hospice Worker

If I approached you on the street, in your office or at the dinner table, and asked you what the worst part of your job was, how would you respond? Would you even talk about your work? Does the public understand what you do?

I’m 31 years old, and have been a hospice worker since I was 19. While most of my peers were flipping burgers, pumping gas or doing grunt work for construction crews, I was holding frail hands, cleaning human mess and, inevitably, performing post-mortem care.

I’ve been married 9 years. I met my wife two months after I turned 19, and six months before I started doing hospice work. To this day, she has never asked me point-blank what I do on a daily basis. She doesn’t want to know. My two gradeschool-age boys don’t know what dad’s job is. I don’t know how to tell them; death is still abstract.

Those of us that work in this business keep our mouths shut regarding our jobs. We get paid minimum wage to do a job that many cannot even fathom, and frankly, don’t understand. Despite our best intentions we form emotional bonds with those that we care for, and when they are no longer a part of our daily lives it affects us deeply in a way that I cannot and will not attempt to explain. We are not nurses. We are not housekeepers, cooks, or shoppers. We are all of the above and then some. We provide a hand to hold, a shoulder to cry on, and a scapegoat to blame when things go wrong.

It took me a long time to acknowledge what I did for a living. I called myself a caregiver, personal aide, personal assistant, and numerous others. I’ve worked in long-term care facilities, and have spent several of those years as a supervisor. Since 2007 I’ve done strictly in-home work, visiting and caring for dying people who wish to remain in familiar surroundings. While working in a facility I had very negative preconceived notions of hospice workers – notions based on the owners and managers I had dealt with rather than the caregivers. When I finally admitted to myself that the work I did was hospice work (I was not working for a hospice agency but was caring for terminally ill people and therefore could avoid the title) I’m ashamed that I ever spoke negatively of hospice work.

Two recent events – events that have centered on the general public’s total ignorance of hospice work – have caused me to examine just why I do it. Unfortunately, when I examine objectively what I do every day I cannot answer that question with any degree of certainty.

I can answer many others.

Despite mostly lurking I have an incredible amount of respect for the people that make up the SDMB. This is a vast, wide-ranging community, and one that has suffered much grief in the last several weeks. I would like to publicly thank Marley23 for discussing with me this thread and the timing of my OP before I posted it. I have given a lot of thought to the timing, and felt that, due to recent events that have affected the board members I would post this now. Perhaps that isn’t wise, however I want to give the board a chance to ask questions that pertain to rarely discussed and poorly understood aspect of healthcare. I want to emphasize that the intent is not to open up wounds or cause grief, but rather increase understanding.

Ask me anything.

(Keep in mind I am bound by HIPPA and will answer accordingly. In addition I have worked my entire life in Oregon and my answers may be state-specific.)

I have no questions yet, but want to say thank you for what you do. I worked at a senior center, for Meals on Wheels, for two years and losing the clientele was the hardest aspect of my job. You deserve incredible respect and admiration.

Are people dying to meet you? (ba-dum-bum)

No questions, but also want to say Thank You for what you do. My father-in-law passed from cancer a couple of years ago and the hospice workers were amazingly helpful to him, and to us during the dying process.

What are the qualifications to become a hospice worker? How do people succeed or fail at the job? For example, do hospice workers frequently stress out over getting a good enough performance review, or, outside of budget cuts, are they pretty much secure as long as they don’t kick Mrs. Spickle down the stairs?

You mentioned minimum wage. Do you still make minimum wage with 10+ years of experience, or as a supervisor?

Other than becoming a supervisor, what are the career paths? Is it pretty much a dead-end job, or can you go from Hospice Worker to Sr. Hospice Worker to Supervisory Hospice Worker to Hospice Manager to Regional Hospice Coordinator by advancing on the job? Are there specialties, in the sense that you can specialize in a specific area of hospice care, such as care for people with Alzheimers’, and get really good at that?

Have you worked with caregivers that clearly were not cut out for the job? What did they do?

I imagine the requirements to be a hospice worker are state specific. In Oregon, it is at the discretion of the hospice agency. Nursing Assistants, Medication Assistants, and Care Providers (a combo of CNA & CMA) work under the authority of the RN, so their job duties are directed by him or her. The agency can and sometimes does hire non-licensed providers if the applicant has sufficient background. (I’m a CNA, fwiw)

The facility I work for does not require a CNA license to perform care. RN’s must administer meds, oxygen, change catheters and feeding tubes, etc. The non-technical aspect is left to the CNA’s and CP’s.

People who fail at hospice work do so because either they’re lazy or they did not know what they were getting into when they were hired. Due to most facilities hiring only experienced or licensed workers this is rare. However, even if someone knows what they are getting into and are not lazy, they rarely last. The emotional drain is too great. When I worked in a facility the annual turnover rate for non-administration was near 100%. Again, as long as a worker can cut it in the field getting a good performance review isn’t difficult. The job isn’t physically taxing.

My facility works with a large number of VA clients, so budget cuts aren’t a big issue. While there are limited funds, they don’t fluctuate much and there is, ironically, a waiting list so we always have someone needing care. I understand people who utilize Medicare have a few more issues, but not excessively so.

One thing about hospice work is it is, by definition, temporary. Insurance companies tend not to argue much about needed supplies, medications, or an extra caregiver because they don’t see it as being long term and therefore are willing to pay for nearly anything. There is a rather strict set of criteria to actually be approved for hospice, but once it is approved the bureaucratic BS all but vanishes.

How did you come by the job in the first place? Friend of a friend? Temp agency? Something else?

Why do you only get minimum wage? Regardless of the necessary qualifications (since it doesn’t sound like you need a degree if you got it at 19), this isn’t a job that most people could do. I would have thought that enough workers would refuse to do such a job for such low pay. How doesn’t this qualify for some sort of hazard pay?

If you got a higher-paying opportunity to do something related to nursing (but not hospice), would you take it? Why or why not?

Is burnout a problem for you or co-workers? How long do people usually last in the job? Is attrition usually due to burnout, no opportunity for wage increases, or something else? Would you say there are usually more job vacancies than good workers, or is it the other way around?

Oregon minimum wage is $8.80/hr. I earn $10/hr with a $0.10/hr night/weekend differential. When I was a supervisor, which was 2005-2007 I earned (when I left) $11-something an hour. It does not pay well, and starting pay is usually based on experience with a subsequent 3- or 5%/year cost of living raise.

It is a dead-end job without further education. However if, for instance, I returned to school and earned my RN or LPN, my field experience would give me a significant leg up when applying for any job that dealt with geriatrics or terminal illness.

As an aside, I am not going to school to get my RN. I’m currently earning an undergrad in mathematics and hope to get out of hospice work in the next few years.

Later on this month I start training with my border collie to be a hospice volunteer. Do you have any experience with dog volunteers?

Shortly after I turned 19 I got a job in a nursing home as a custodian / maintenance man. The facility closed down permanently a few months later, and I went to school on a dislocated worker program. My intent was to get my CNA and then my RN, but never made it past CNA.

As for the minimum wage issue, I have no clue. Most facilities require CNA’s, and that is not exactly a common career choice so finding good applicants is rare. I don’t understand the economics of it. I do know that minimum or near minimum wage for CNA’s is standard

I’ve moonlighted doing other jobs during the past 12 years: I worked at a book distribution warehouse, I worked for Lowe’s installing window blinds, and I did some construction work. I’ve always come back to hospice work. Being a peon in a warehouse sucks, and doing something that makes a difference is worth the low pay. The people who stay stay because they like to make a difference.

Never seen this or even heard of it. Can’t imagine it would do anything but good, though.

When I worked in the facility we had a housecat that lived there permanently, and the staff went nuts making a home the damn cat. We gave him his own room with his name on the door, wallpapered it with Kliban Cats, etc. All the residents got a little plush cat when they moved in… it made the residents laugh, which helped them a lot with what they were going through.

Do you have many patients who live alone or have no family nearby? I imagine that would have to mean round the clock care, which seems complicated if they want to stay in their home at the end. Do you each take a shift or do you count on at least some coverage from family, friends etc? Also how do you handle it if family are present but behaving badly?

That’s an interesting question because every client is different.

Rarely is someone in our care that has nobody at all to visit or have an interest. Sometimes it’s a niece or nephew, grandchild or great-grandchild, but there is usually someone who is involved in the process… in fact, I can only remember one person who had absolutely nobody. The emergency / “family” contact was a lawyer this person had used years before for some personal matters. IIRC this person simply had no family left, anywhere. Sometimes the family is directing things from afar, which is fine, but they are involved. For those that do not have family to provide some of the care, we do work in shifts. Either three 8hr or two 12hr shifts. How we divvy up the shifts usually depends on the client’s needs, we cannot do shift changes in the middle of a scheduled task, such a shower or at mealtimes. The client’s needs dictate who is there and when.

We do provide respite care. People who have spouses or children living with them provide some of the care, and we visit to give them a rest. Sometime we visit simply to perform medical tasks such as catheter changes or bed baths. There are numerous families out there caring for a dying loved one and doing so alone. We work with families to provide that care that both the client and the family need. Sometimes it’s a fine line.

The worst by far are families (and clients) who think that we are some sort of valet or lady’s maid. We put up with a lot of crap, and have been subjected to a lot of requests that are far outside our job duties, some bordering on abuse. Off the top of my head some things we have been asked to do that are not allowed are: [ul]

[li] Caring for animals[/li][li] Yardwork[/li][li] Purchasing booze, cigarettes, and porn[/li][li] Household maintenance and improvements (no, we will not help you mix concrete or build a garage)[/li][li] Moving furniture or items in storage, unless it is for the direct care of the client.[/li][li] Answer to the title “servant”[/li]

In fact, the VA will actually terminate a hospice contract if a client or their families do any of the above. Usually they’ll get a hush-hush off-the-record warning from the caseworker the first time it happens, but if it persists the VA is done. I’ve seen this happen a couple of times; the VA doesn’t screw around with abuse. Go government!

There is also the constant accusations against the hospice worker of theft or abuse, but in my 12 years of doing I’ve only seen these charges substantiated once.

And to elaborate a bit on my previous answer to moejoe, there is a substantial difference between the behavior of a grieving person and someone who’s simply being a dick. Sometimes it’s not easy to tell, but we let a lot of stuff slide when it’s obvious someone is acting somewhat irrationally due to dealing with their own or a loved one’s terminal illness.

I was an orderly in a nursing home for a few years, so I have a small inkling of what your job is like and how it can wear on you day after day. I live in Portland, and if we ever meet up dinner is on me.

No questions just to say thanks for what you do. My unlce passed away from lung cancer at the age of 57 two months ago, his final week was spent in a palliative care facility. The people working there treated him with the utmost dignity. We received the call that day that his condition was worsening and it wouldn’t be long. They still changed the sheets, cleaned him up like they did every other morning. They then placed a flower in his hands after he passed and consoled us with hugs.

Thank you.

What are the qualifications for a patient to get into hospice care, and are there last-ditch alternatives for patients who don’t qualify (especially those who live alone and have nobody to care for them, even slightly)?

I think my HMO covers home hospice care, subject to a lot of qualifications, but I don’t know that they offer anything for patients who don’t qualify for home hospice.

The “conventional wisdom” on nursing homes is that they range from top-notch to chambers of horrors, largely according to the patients’ financial (or benefits) status. Is there something likewise for the range of hospice care a patient can get? Are the financially indigent likely to end up just dying in pain in the back alleys?

Just how much can hospice really do to keep terminal patients comfortable and pain-free? Does hospice provide palliative medicine (and if so, how aggressively)? Or does that require the patient to be in a specialized palliative care facility? Can patients get palliative sedation if they need it, or even terminal sedation if that’s what it takes?

Note the current thread in IMHO, discussing the difficulties for patients to get effective pain medicine, even patients who extremely and obviously really really need it.

How does this play for patients in hospice? (Home or otherwise.) Can and do hospice patients get all the pain meds they need? (And, as with my previous post, does it depend on the patient’s finances or benefits status?)

I can speak to this.

Medicare actually pays for the hospice benefit on a per diem basis based on a specific formula. This formula takes into account where the care is given (home care, for example, pays less than facility care), geography, and a few other factors. All expenses come out of that per diem, which is why hospice agencies can provide a lot of services without some bean counter standing over their shoulder. Most other insurance companies work in the same way.

You’re right that there are strict criteria for the patient to qualify for hospice benefits. I have some cites that may be useful, and I’ll be happy to post them in a couple of hours, when I’ve got time to do so.