Because of having worked with social workers and because they play such a vital role in hospice, it would not be possible to write a book about hospice and not include them.
Upwards of 75% of people who's lives could be improved by hospice but do not get admitted to hospice. This is because they, their families or their doctors don't know or understand what hospice is or does.
After interviewing and working with my social workers, I realized many do not get what they do. Beyond the specifics, there is one incredible skill they have that we all can benefit from. If we learn this skill, we can improve our lives and our relationships exponentially.
Because we are social beings, we need social workers. This is the first part of chapter 2 of Dying to Be There: 21 Life Lessons From Those at the End of Theirs.
One more thing: Crowd Editing.... See an error or omission, please let me know what and where so I can correct it.
Donna, a hospice social worker, began our meeting by asking if I knew what it was that social workers do?
Okay, you might wonder what life lesson could possibly come from this topic. Please be patient as you will see, just like me.
I knew they do a lot of work behind the scenes. But from my hospital nursing experience, a social worker was seldom needed or used by the floor nurses. They worked alongside us but we rarely depended on each other.
Surprised at my response, she explained that sometimes social workers are viewed as little more than people who take children away from their parents. This, of course, is not the case. Social workers help the disenfranchised, those stripped of all their power, by making services available that can help them. They look for their strengths to empower them to meet their challenges.
Social workers are viewed as little more than
people who take children away from their parents.
They do more, so much more.
Social workers look at where patients are in their lives. Patients are not defined by their illness or limitations. Rather, they are identified by their strengths.
In contrast, what if one of my clients was to be seen by a psychologist or psychiatrist? The doctors would look for the underlying disability or weaknesses to define the problem faced by my client. They will look at the challenge as an illness and then treat it with either therapeutic conversation or medication.
If a patient is a member of a dysfunctional family, the social worker is not concerned that the the family dynamics are not the best. The family has obviously survived up to the present. Instead, they look for the strengths the members have individually and the family has as a whole. The question becomes, how can the family use those coping skills to meet their current challenge?
With this power identified and tapped into, the social worker helps them to connect to various services that can help them to meet the challenges they face.
These services could include getting help to clean a person‘s home, providing for transportation, getting nutritious meals, connecting them with the area Department of Aging, or assisting them to receive medical treatment.
What Donna said made sense. Remember she said that social workers "...reflect on the strengths the family members have developed to cope, and how the family can use those coping skills to meet their current challenge."
That is the key, the lesson to be learned.
This is especially true when it comes to our own families. While this may be difficult to apply, once you learn how to, your life will be enriched. No matter how dysfunctional our family may be, it is possible to have a positive family life, fulfilled relationships and to make the most out of our family dynamics.
If you think your family is dysfunctional, technically it is not. This is because of Catch-22. Your family is not totally dysfunctional if you are functional enough to know that your family is dysfunctional. I know this sounds ludicrous but there is a truth somewhere inside that inane statement. If you think about it long enough, it will start to make sense.
Human nature is such that we feed off the actions and words of those we are around. Sometimes we may enable certain conduct. Sometimes we are codependent. Yet we have what we need to in order to survive or find a measure of peace in Life Lesson 3.
The point is, somehow, your family, as all of ours, has survived and perhaps in some way thrived up till now. By learning to work with the strengths of our family (loved ones or co-workers), it is possible to make things better. Perhaps you have done just this. If you have not yet, try it. You may find this knowledge lifts a burden off your shoulders.
Sometimes individuals or families need help to make life decisions. Hospice social workers empower people to make decisions. They help us to work with the many challenges that may be faced as our loved ones or we ourselves near the end of life. They can intervene when necessary to help resolve the various crises or challenges (from personality differences to disagreements) that may arise.
Donna added that sometimes social workers simply help the patient get into the healthcare system. They may help the patient or their family to be aware of the benefits that may help manage the cost of hospitalization. These costs could be monetary, physical or emotional. Helping families see the challenge and resolve the problems is part of the job.
To further explain the dynamics of social work in comparison to other aspects of healthcare, Donna asked me about the function of nursing.
While most people don't realize it, nurses are scientists and educators or at least they should be. Of their many many responsibilities, they measure, record, document and assess outcomes. But their most important role is that of being a healthcare educator.
"It is a profession of science and art that helps individuals, families, and communities receive and maintain the best health and life from birth to death within their limitations and as defined by the individuals," I replied.
Donna then asked, "In that setting of being a healthcare educator, where is the focus? Let me warn you, this is a trick question."
I replied, “It is on the patient's recovery and management of health. So much of it is up to the patient and their compliance to the education the nurses give.”
There is a potential problem with this. There can be a failure to look at the whole person. If a nurse is teaching people how to continue to recover from what ever brought them into the hospital, they need to consider the persons ability to comply to that teaching and the setting where it will happen. Otherwise, it is like telling someone they need to swim every day but they don't have access to a swimming pool.
It can even happen in the hospital when care is being given. She shared an example of how failure to look at the whole person can happen.
She was sitting with a newly admitted 80 year old in the hospital on the floor where they take care of heart patients. The nurses came in the room to give report at the change of shift, one off-going and one on-coming nurse. As the reporting continued between the two nurses at the foot of the bed, the 80 year old complained of a leg cramp. The nurses continued talking to each other without acknowledging the patient's complaint about his pain.
Donna got up and started helping him by flexing his foot with thanks from the man that it helped a little. Then he let out another moan, saying that this was 'the worse pain he ever felt in his life.' Donna then looked at the nurses at the foot of the bed and asked if there was anything that could be given for the pain. The more experienced nurse said orange juice. (Since pain management is my expertise, actually this was not a bad choice, but only if salt was added to the OJ.) But they did not leave to go get it, they continued with report. When Donna offered to go get the OJ, they said it was not possible as it was locked up.
Think about this. If it was your grandfather or grandmother, would you have said, "Let me finish report first?" Their tunnel vision only let them see a patient being treated with a heart related condition, not a man in distress because he had a fluid and electrolyte imbalance. Ironically, the pain in the leg could have been an indicator of a pending heart attack. They were not treating the whole person.
Healthcare is starting to look at the whole person, but it will take time. Outside of the specialty of Holistic Nursing, hospice is the only other treatment modality that has a culture of looking at the whole person. Eventually all of healthcare will be holistic. For now, many try, few succeed.
"Going back to the family setting that holds the diamond that is life, did Tom ask if you noticed a commonality?" she asked.
"Do you mean the connection to life?"
Donna went on to explain further about the tunnel vision. It is simple human nature. As a nurse, your focus is on what ever discipline you are working in.
Social workers, like hospice nurses, are trained to look at the whole person, the whole family and in some cases, the community.
Beyond improving health, we as a society usually do not look at and discuss people as a whole. When we get to talking about someone, how often do we talk about the negative, the bad or the drama. We fail to look at the whole person and the life they lived and the contribution they provided to their family or community.
This fail also extends to how people want to live their last days, in other words, how they want to die. As a result, so many social workers have to deal with families that have unreasonable expectations.
For whatever reason, they want their family members to keep living. Yet the price for keeping alive is often needless suffering. What makes this hard is what the patient that is dying enters a state where they can no longer speak for themselves. Now the decision is left up to the family. Without any directive, at times the family may disagree on the best way to proceed.
Because as humans we are focused on living, sometimes it takes redirection to get people to look beyond this thinking. We have to look at the question, are we prolonging life or prolonging death and at a cost of additional suffering?
When someone has entered the period of living that is the 'end of their life,' families that have not come to acceptance of this fact may want to keep them alive, seemingly at all cost. The dying may have spent a lifetime abusing their bodies but it is human nature for many to want some miracle to happen or be provided.
The first and most important thing we work for is that they and their families are comfortable. It is also important to develop the full potential of the person dying as well as the potential of those around them, and the community or society of which they are a part.
So the first thing we need to consider is, when it comes to the end of our life, what do we want, mentally, physically and spiritually?
There may be economic concerns or challenges that need to be discussed and be dealt with. Some have a hard time making a very special decision: to document a 'Do Not Resuscitate' order and under what circumstances we would want such an order.
Family members may not agree to a 'Do Not Resuscitate' order. Their reasons are varied. Sometimes it is denial. For some it means giving up hope. For others it is a moral decision.
In virtually all cases where there is disagreement, there is a lack of understanding, which means more information is needed. This is a discussion and decision that there may never be a right time to have, unless we make the time or we are faced with making a decision and we have no time.
Donna now referred to the question Tom left me with earlier, asking, "So, of the decisions families need to make, which is most important?"
The four parts of the family setting that are most important at the end of life are the decision for palliative care vs curative care, maintaining dignity, maintaining the maximum living and being there.
With the grin of a student who just figured out the answer to a trick question, I enthusiastically replied, "All are equally important! None would be more than the other."
"Good answer," Donna replied, "Unfortunately, sorry to say you are wrong and you have more to learn. You see, the most important aspect of a family is whichever is most essential to any one of us at any given point during our life and especially as we come to the end of our life. It shifts and changes with each person. By using the strengths of the one who is dying and their family, shoring up any weaknesses, it will be possible to fill the need and strengthen their weakness."
I realized that this makes a very important point. None of us have all the answers. When we can find the strengths in our family members, a meeting of the minds takes place and we find the best possible outcome.
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The Introduction: How I Came to This Place Called Hospice
Chapter 1 My Introduction to Hospice .....or
Why would anyone ask the job interview question, "How do you want to die?
Pen. Pencil and Ink
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