Hospice Series (Part Two): Hospice Services in the Nursing Home

Hospice services can be delivered in several different settings including hospital inpatient, home services, assisted-living facilities, and nursing homes. This entry in the Hospice Series will deal specifically with the ins and outs of arranging services for loved ones in long term care facilities.

More than half of my patients currently reside in nursing homes. A significant percentage of my home patients will end up in such facilities once their loved ones can no longer handle the “heavy lifting” of their care by themselves at home. Hospice can be extremely beneficial for patients in long term care for several reasons including the following:

  1. Once a patient is living in a nursing home, their Medicare benefits are no longer paying their room and board as Medicare will only do so for a fixed amount of time and only for patients that are receiving restorative or rehabilitative therapies. The great majority of hospice patients do not qualify for such treatments as they are unable to participate and make the significant gains required by Medicare for continued reimbursement. At this point room and board are either being covered by private pay, long term care insurance, or Medicaid (or some combination of these). This means that Medicare will cover hospice costs at 100% with no additional charge to patients or families.
  2. Hospice patients in nursing homes typically receive more person-to-person contact than other residents. Hospice nurses will usually make 2 one-hour visits per week as will hospice aides. Patients will also have a social worker and chaplain making regular visits as well as potential massage therapy and volunteer time. This is likely the reason why patients coming onto hospice service may become a little more social toward their own family members as they are forced into interpersonal interaction with more people. Hospice is participatory for patients and families and keeps them more engaged with one another.
  3. In any nursing home, whether it be the nicest five star facility or a notoriously undesirable one, the patients that receive the best care and the most attention from staff are typically the ones that have the most visitors. While this may seem not to make sense on the surface, facility staff are kept on their toes as there is more potential for hospice personnel to notice dereliction of duty by such staff. Simply put, hospice provides several extra sets of eyes for families and tends to communicate anything of concern directly to a patient’s family. Nursing home staff know this and act accordingly.
  4. Nursing homes are unfamiliar places and a patient’s adjustment to them can range from disruption of normal lifestyle to extreme paranoia and emotional discomfort. Hospice staff offer a modicum of consistency that can provide comfort for patients as they tend to look forward to seeing the same faces on a regular basis. Patients also feel more important and loved by the extra attention.

The bottom line is that, should you find yourself in the position that your loved one’s physician feels that hospice is the desired medical intervention, you can take some comfort in the aforementioned facts. Once these are adequately and tactfully explained to families, they come to see hospice in the nursing facility as what I call both a “win-win situation” and a “no-brainer”. Until next time.




Getting Comfortable with Discomfort

One of the most important lessons I’ve learned as a social worker is that, in order to excel, you must absolutely get comfortable being present in situations that make your skin crawl. You will encounter people, places, things, and circumstances that will test the limits of your ability to maintain a modicum of objectivity, but how do you become comfortable with discomfort? From my experience, three things will help you learn how to do this:

  1. Time on the job. Repeated exposure over a long period of time will familiarize you with the unpleasant particulars you will face. I always say that, while nothing surprises me, some things do shock me.
  2. Having a strong sense of yourself and your values. This will help you notice whether your discomfort is more about you than your client’s presenting issues.
  3. An understanding that the process of learning this skill will never be over. You can refine this skill, but you will never perfect it.

For instance, my very first client at my first “big boy job” was a 15 year-old boy with significant anger issues to whom I would be making home visits. When I pulled up to his family’s trailer, he was sitting on the front steps smoking cigarettes with his family. By family I mean his mother, 12 year-old sister, and 10 year-old brother, all of whom were smoking. His home was infested with fleas from the seven dogs that crowded the living room, only a few of which were his family’s pets. The others were strays that had simply wandered in and were being tolerated by the family.

He had lit fire to a neighbor’s car because he was unhappy with the relationship between the man and his mother. While my own values and the way I conducted  myself in my personal life were completely at odds with much of what I was experiencing, I quickly learned this kid was a person with very real and alarming concerns that deserved a shot at help as much as anyone. I had to put my judgment on the shelf and realize it wasn’t about the life to which I was accustomed. The fact that I included this story from so early in my career, about 13 years ago, shows how deeply it affected me and how, so many years later, I am still conflicted about the way I handled the situation.

I could fill a book with stories of clients/patients that led me to places that challenged my ability to stay present while feeling extremely uncomfortable. Some of these situations involved people I was tasked to help in which I found very little about them to like or admire. However, I have made it a lifelong goal to practice Carl Rogers’ idea of “Unconditional Positive Regard” which states we must treat people as human beings regardless of things they have done. It is not always easy and it would be dishonest of me to say that I always succeed, but it is a work in progress. Remember, the things that make you the most uncomfortable are also your greatest potential learning opportunities. Do not shy away from them.

Most importantly, it is crucial to have a support person, whether it be your own therapist or a colleague with whom you can process such events. This will help you more clearly see what it is in you that causes your discomfort. Your continued effectiveness as a social worker depends upon your dedication to ongoing personal growth. If you do not have a support person, please seek out someone with whom you feel comfortable. It will make all the difference!



The Illusion of Balance

I often hear people talk about achieving “balance” in their lives as some sort of Holy Grail, like a permanent solution to the inevitable ebbs and flows they are experiencing in different areas. It’s become a bit of a cliché in society, so much so that we have the stereotypes of the workaholic, the parent that has given up their career (or at least put it on hold) to stay at home with the children, and the people pleaser that never turns down an obligation at the detriment of his/her personal well being, among many others. If we could just get everything firing on all cylinders in all areas of our lives, we would be perfectly in balance and, as a result, happier and more well-adjusted. Most people with whom I interact at least partly believe this is possible.

I’m here to tell you that it’s a bullshit myth or, as Morgan Freeman so eloquently stated in “The Shawshank Redemption”, a “shitty pipe dream”.

We all have multiple areas in our lives that require our attention. These include career, family, friendships, social obligations, volunteer work, hobbies, and many others. The myth is that we can create a life where we are getting a healthy dose of each of these things without our participation in some of them taking away from our time in the rest. Someday, we think, the stars will align, the magical percentages among these slices of life will add up perfectly, and we will have arrived. Everyone around us will marvel at how well we are managing all aspects of our lives and, in the process, becoming optimal human beings.

That all sounds very nice, but the fact remains that such balance would be mostly impossible even barring unforeseen external events, let alone with the potential for everything to be derailed by one of life’s whimsical and arbitrary interruptions. The plain truth is that, on the whole, we get out of something roughly what we put into it. The more energy I put into my marriage, the better my relationship with my wife is apt to be. Spending excess time in the pursuit of career development will likely enhance my professional standing. Paying more attention to my close friends will strengthen those bonds. It is exceptionally rare, however, that any one person has the time, resources, or energy to manipulate all of these conditions to his/her favor at the same time.

Thus balance does not really mean a fair relative satisfaction amongst the different spheres of our lives–it merely means that everything is temporarily going our way. This inevitably happens for short periods, and is usually due to factors other than our own direct personal influence. Sometimes things just click and we feel we are coasting through our days without any speed bumps. Other times it seems that, although we are desperately trying to keep everything together, we just can’t get anything to work out in our favor. That’s life. Balance, like stability and permanence, is an illusion, a mythical state for which we all strive, yet remains maddeningly elusive. I think the trick is to enjoy the times when everything is going well, to know when one area requires more attention than others, and to be mindful and present in our lives no matter what is happening. In the end even the difficult periods are worth it because they enrich our understanding and experience.

Until next time, stop trying to micromanage everything and relax into the rhythm of the universe. It’s much more beneficial to go with the flow than to fight upstream.



Hospice Series (Part One)

People fear death. Even when they or a loved one are beyond any hope of a cure and their illness is causing them so much suffering that the mere act of living has become an arduous chore, death remains the white elephant in the room. Perhaps it’s because the dying process reminds us of the potentially terrifying reality that we are mortal, or maybe we feel we don’t have the right to make any choice that may hasten the end of life, but I have seen grown men and women rendered incoherent, awkward, and even interpersonally dysfunctional when they are forced too close to the fire. This is part of what makes my job as a hospice social worker difficult as I feel I am usually a leg down when meeting with the family of a potential patient.

One of the most rewarding parts of my job, and my career in general, is having the opportunity to provide education and information to those that are in desperate need. I liken hospice to 12 step recovery in one sense: almost every adult is familiar with the concept of helping someone die peacefully (in the case of hospice) or of seeking a means to quit alcohol (in the case of Alcoholics Anonymous), but the same people have absolutely no idea what actually takes place in either case. Hospice is something they may philosophically support when it applies to other people, but It remains, for the most part, an issue with which they hope they will never have to deal personally. It is precisely for this reason that I would like to reach the largest population possible in order to, as I put it, take some scary out of the word “hospice”.

Families typically assume that it is virtuous and courageous to fight disease unceasingly, no matter what the cost. Call it denial or call it hope (most call it denial, I call it both), but the concept of embracing death seems to be diametrically opposed to our very nature as human beings. This is why many cancer patients, when faced with the grim reality of their prognosis, still choose to participate in grueling, painful, and ineffectual procedures in the hope that they will be one of the lucky few that come out the other side. The persistence of this illusion is exacerbated by the fact that many oncologists become heavily emotionally invested in an individual’s care to the point that they perceive hospice and palliative care as a personal failure. By the time such patients come on service with us they are often days or weeks from death and cannot, therefore, benefit from the full array of services hospice can offer. 

Medicare currently covers nearly all hospice costs, making the service absolutely free to most of the people that qualify. Nevertheless, there remains a vicious cycle wherein people wait until the very end to accept hospice care, pass away within a short time, and friends and family (as well as people in the community) see this and perpetuate the assumption that hospice is only for those that are literally days from death. This thinking is why I have actually been called to hospitals where a patient is being terminally weaned from a ventilator with full expectation that they will pass and I am only there on the off chance that they survive. Never mind that my agency could have been involved for the past six months, educating the family on signs and symptoms of decline and helping them be ready emotionally to say goodbye. While we offer thirteen months of follow up bereavement services to families following death, this does absolutely zero good when we only have three days to connect with them and build rapport. At that point every bereavement contact becomes a mere reminder that they have lost their family member and thus does more harm than good.

This is the first of a multipart series of the realities of hospice care. I feel distinctly qualified to write on this subject for several reasons. To begin, hospice is my first love and the path I have chosen after performing social work in various settings. Secondly, as I am an LCSW I am able to perform much needed clinical work with families experiencing complex grief and other systemic issues. Lastly, I have worked on both the clinical and marketing sides of hospice and can, as a result, provide a complete look at the bigger picture (macro) as well as the individual level of care (micro). I hope to provide useful information for anyone that has a client, patient, friend, or family member that may benefit from hospice and palliative care. More to come…



The Nomadic Social Worker

I have worked in many settings during my social work career and have enjoyed certain aspects of nearly all of them. As an outpatient child and adolescent therapist I became accustomed to spending my days in an office I had outfitted to be as comfortable for my clients as possible. The dim secondary lighting, the beanbag chair, and all of the hands-on games and objects present had the desirable added bonus of providing me with my own safe and comfortable environment.

When I went to work as a hospital social worker I appreciated the freedom to move around the campus as much as I needed or wanted. The facility was like its own little city, filled with different and seemingly unrelated departments and units that were, in fact, shot through with the common thread of the hospital’s personnel. Previously an incurable introvert, the hospital helped me develop a healthy and robust extroverted side as I had such a high volume of contact with so many different people. I came to thrive on these relationships and am still pleasantly surprised to see so many nurses and social workers that I know when I visit the hospital for various reasons, work or otherwise.

Performing social work at an inpatient dialysis clinic was a completely different experience and probably my least favorite setting. I relished having access to my patients on such a regular basis, but it was difficult to be in the building hour upon hour every day with not enough work to keep me busy. The atmosphere on the floor of the clinic, where the patients received their treatments, was thick with the boredom and frustration that emanated from the people that viewed dialysis as a life sentence rather than a life-saving medical intervention. I found the overall experience rather depressing.

So I enjoyed being in an office as long as I had my own space and plenty of clients and work to keep me busy, but my restless side yearned for the freedom to wander from room to room and floor to floor that the hospital provided. Surely there was some sort of compromise.

Enter hospice social work. There I found a job that might have eaten me alive had I not been a seasoned veteran by the time I entered the realm, but that happened to come along at the perfect time. I have the luxury of an office, but probably spend less than five hours per week there. The rest of my time is spent doing two of my favorite things: driving and talking to people. I am simply given a caseload and geographical territory and am responsible for managing them. My office is a 2013 Camaro SS with satellite radio and my computer is my iPhone, the bare essentials I need to perform my work. I subsist on protein bars, coffee, and loud music as I cruise from nursing homes to hospitals to assisted living facilities to patients’ homes, all the while practicing a very specialized and complex form of social work that melds clinical skills with medical knowledge and appropriate care planning and documentation. I feel like one of Jack Kerouac’s “Dharma Bums”, a modern day nomadic social worker delivering hope and compassion. This suits me perfectly and I am profoundly grateful that such a possibility exists.

In short, everything I have done career-wise has prepared me for this particular niche, and my great fortune is not lost on me. I wish all of you a similar path as you toil in the trenches. Until next time.



Reefer Madness: The Flip Side of Marijuana Legalization

I am by no means a moralist when it comes to the subject of drugs, illicit or otherwise. I would like to preface this post by stating a few things:

  1. I am an addict. While I am in recovery, I personally believe that addicts are physiologically different from non-addicts and have a propensity for drug/alcohol addiction not found in the general population. Even though I am sober, I will always have this biological make-up and the only option for me is complete abstinence as I cannot successfully moderate drug or alcohol intake.
  2. While my relationship with alcohol started at a very young age, my drug of choice ended up being marijuana. I have since learned that I enjoyed it so much because it was very effective in masking my anxiety (which is considerable and disordered).
  3. There are people who use drugs and alcohol recreationally and seem to be able to do so without suffering the effects as me.

That being said, with all of the attention that marijuana legalization and decriminalization has received in the media, I would like to weigh in with my own opinion based on personal experiences. I did not begin regular use of pot until I was 19 years old. I had smoked during high school, but seemed to be one of those people that was not really affected by it. Perhaps that’s because I was usually already drunk before I partook. I remember the exact moment my love affair with the drug began. I was attending community college and had given a fellow student a ride home after an evening class when he invited me into his place to smoke a joint. This time it had it’s intended effect–I was seriously HIGH! I felt the body euphoria and a beautiful release from stress and anxiety. I immediately knew I had found the answer, though I didn’t even realize I’d been seeking one.

For the next five years or so I smoked weed as much as I could. As drug addiction is a progressive phenomenon, I could say no to it at first if I thought I needed to stay sober, but that ability diminished rather quickly as I degenerated into little more than a lab rat tapping the lever that administers drugs even though they would be accompanied by an electric shock. As my addiction grew out of control, I began to work my way through different groups of friends, finding new ones when the old tired of me. An addict will eventually find a way to drive away everyone that does not share his/her enthusiasm for and dedication to the desired substance. I was left with a few people in my life that enabled me to continue my use.

During this time I also dabbled with “harder” drugs and found that, while I enjoyed them, my constants were pretty much pot and alcohol. I needed one or the other (or both) to sleep every night. I flunked out of college twice and dropped out another two times. Smoking pot robbed me of any ambition except wanting to do it as often as possible. My life and soul were empty. I was a bottomless pit of want.

When I was just shy of 24 years old I had my first panic attack. It happened after I got high one night after work and was the most awful thing I’d experienced up to that point. I remember going to my girlfriend’s house and rolling up into a ball on her bed, not understanding what was happening. I swore I would never get high again. That was September 3, 1998 and was the last time I touched marijuana. I quit drinking later that month for good.

If the story ended there I might not be writing this today, but it doesn’t. For the next three weeks I grew in confidence as I found it easy to leave pot alone. I had gotten back into school and was working on my B.A. at McKendree University. I was sitting in class one night, staring out the window, when my mind began to race uncontrollably. I was sweating and completely overwhelmed by a sense of impending doom. I was having a sober panic attack, the first of many to come. In fact, I spent the first four years of my sobriety in a state of near-constant panic. Sixteen years later I still deal with suffocating anxiety on an occasional basis, but it is much more manageable. I feel as though I wrecked something in my brain due to a genetic predisposition mixed with repeated, heavy drug use. I will likely be dealing with the repercussions for the rest of my life.

This brings me to my point: I support the medical use of marijuana as well as legalization for people that are able to use recreationally. I would be remiss, however, to keep my experience to myself when I hear people tout the safety of smoking pot. One of the most common arguments is that it is “safer than alcohol.” I agree with this for people that are not alcoholics or addicts, but the plain fact is that POT IS JUST AS ADDICTIVE AS ANY DRUG TO SOMEONE THAT IS A POTENTIAL ADDICT. As the saying goes with drug addiction, genetics load the gun and environment pulls the trigger.

I wholeheartedly believe that marijuana is dangerous to addicts. It will alter their brain chemistries and has the potential to prematurely trigger any biological predisposition for mental illnesses. It can take over their lives and leave them with no ambitions or dreams. It can dull their thinking and be potentially fatal for anyone that drives under the influence. While it may not be inherently fatal (such as alcohol, heroin, or cocaine), it can rob people of their lives slowly.

With the inevitable legalization of marijuana looming large in the near future, I would urge anyone who thinks they might be at risk for addiction to think about the dangers of the drug. Again, I am not a moralist or a prude when it comes to drugs, but I feel a certain responsibility as someone that has been there and still carries the emotional and psychological scars to help anyone that will listen to avoid learning the hard way. Please do not take this as a lecture. It is meant only in the spirit of helpfulness.