The Conversations of Palliative Care

Autonomy and Self-Determination Until the End

Jennifer Zelen DNP RNC CHPN

• Publisher: Christian Faith Publishing, Inc.
• Year: 2022
• ISBN:
  9781639611270
• Topic: Médecine
• Subtopic: Prestation de soins

I spend my days explaining to people how they can expect to die. The Conversations of Palliative Care

is a book related to decisions people have to make at end of life as well as those asked of them in the months or years leading up to then. It is a book designed to get people to begin to realize how their illnesses affect them and what the natural course of their illness is expected to be. A variety of topics related to this unique time in a person's life is described as well as considerations for those who provide palliative care. Symptom management, staff angst, ethical issues, documentation, religious and social needs are addressed as well as specifics related to disease states, among other issues. The information is then personified through case studies: within a hospital, at a private residence, and a pediatric vignette. The purpose of this book is to raise awareness to end-of-life decisions patients are asked to make while increasing the comfort level of the medical staff who care for them. Ultimately, palliative care increases patient empowerment and knowledge about their bodies and unique set of medical diagnoses. Decisions they ultimately make regarding medical interventions are aligned to their person beliefs. These decisions are truly made in an educated manner. Utilized correctly, palliative care follows a person throughout the health care continuum.

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Staff Angst

People who work closely with patients often feel like their hands are tied. This is for a variety of reasons, many of which I have felt myself. We see the patient who returns to the emergency room time and time again for seemingly the same issues until we find ourselves rolling our eyes when we hear their names yet again. Sometimes, snarky remarks are made, and the shift goes on. People outside of the field might think that the staff is being disrespectful or even mean. What they do not realize is that this is often the way we deal with the frustration we feel by taking care of people who clearly do not have their needs addressed properly outside of the hospital.

I realize that there are always outliers who view the hospital as a social situation. People who are noncompliant. People with no support. What we should be considering is PC for these people we see all the time. They will dedicate the time needed to understand exactly why these people are driven to come to the ER many times a month, or week. Are they lonely? Scared at home? Out of resources for food, heat, shelter, medications? It is easy to become jaded. It is also easy to recognize that each encounter with this patient sets the stage for the next. Meaning, Mr. X is in again for shortness of breath. His blood sugar is out of control. He is out of his medications—again. He needs a shower and has a new sore on his right great toe that was not there last week when he was in.

You assess, get labs, a chest x-ray, dinner for him, and listen to him make small jokes as he asks how you have been. On one hand, you know that he is there essentially for a checkup, but on the other you wish your evening wasn’t tied up with something that could have been addressed as an outpatient. Have we considered the following: Does he have transportation to go to his follow-up doctor appointments? Is he able to manage his medications? If not, who is helping him? You remember that he is always there alone and has a friend as an emergency contact. You know that he is a veteran from the Korean War hat that he wears all the time. Is he involved with the VA services available to him? Under it all, we wonder what we can do to keep him in a healthier state and allow him to be helped at home.

Health care professionals, whether they are doctors, nurses, social workers, aides, or therapists, came into the profession because they wanted to help people or to make a positive difference. Working in conditions that make us feel helpless can also make us feel powerless. “Someone should do something” is a sentiment that I have heard often. This is moral angst that we are feeling. We are trying to help, but we inherently know that something is missing with the patients that we care for. We may not know what the missing piece is or what to do about it and feel like we are muddling through.

If we are lucky, there is a PC program available to refer these complicated patients. If not, we can expect to feel more of the same in the coming years. In the instance of Mr. X, in an ideal world, he would have access to a team available to help him to maintain his health outside of the hospital more reliably. Nursing would visit and coach him on dietary issues as well as making sure he is medication compliant and assess for skin integrity. Their social worker could address transportation needs as well as the emotional needs he might have related to his apparent social isolation. They can assist him to access the VA system if he is eligible. The pastoral care service would support him with any existential issues he may or may not have. In summation, he is beautifully supported. Fantasy? No. This is how PC operates.

Patient Home Gleanings

Unfortunately, many PC programs operate only within the realm of a hospital setting. This is only the briefest of encounters that does not view the patient in their own setting—their home. In the home, we gather untold facts that formulate a perspective of the unique individual we are there to see. Are they a hoarder? Are they warm? Do they have a variety of food? Do they want it? Do they have pets that they are compromising their own resources for? Do they have family or friends that are available? Are their surroundings clean? Have they ever been? (Some people have always lived in conditions that are not optimal—we are not there to judge, as long as they are competent.) Are they proud and ashamed of how they live but do not want their infrequently visiting family to know for fear of being forced to move? Do they bathe only once a week because that is how they were raised? That might be fine, but in the case of Mr. X and his foot wound, he might need in home education for him to realize that his inattentiveness may result in a future amputation.

In-home conversations can be blunt—deliberately. Too often, medical discussions are relayed in a manner that the person does not understand. If they decline certain interventions, they can be labeled as noncompliant or difficult. Is this really fair? If the patient that you are addressing cannot tell you accurately, in their own words, what you have told them you can assume that they do not understand. This includes test results, proposed treatments, side effects, options, resources, etc. In assessing where they are in relation to what their needs are lead the conversations. These encounters are not condescending. This is not a persuasion for the person to conform to a way of life that they have never known or do not want. It is an extension of information that all people deserve in order for them to make informed decisions regarding their care and their lifestyle. Another factor is: what is important to them?

Let that sink in as a caregiver. Be introspective. If you were that patient, how would you respond? What is important to you to live as an independent person? Being able to live alone? Being in a position to direct your life in all aspects? Things that unencumbered people, and almost everyone, takes for granted. But what we need to think about are the vulnerable people who think that they are still in that place that we know are not. Or people who are scared, knowing that they are beginning to fail and need more help and do not know how to go about getting it or are in denial about their needs. How do we, as health care professionals, go about supporting these at-risk patients outside of the usual arenas where we meet them?

We have all encountered the sweet patient who arrives alone from his or her nursing home. We see her settled in her hospital room, and she cannot relay why she is there. A quick review of her chart sees that one of her diagnosis is dementia. She lives in a local nursing home. She is diagnosed this admission with another pneumonia that the family, who lives several miles away, “Of course wants treated and why does she keep getting this anyways? She had the vaccine!” You as her nurse have taken care of her several times over the past few years. She has grown increasingly needy in her care. She cannot bathe herself or feed herself anymore. She is frightened and agitated sometimes when she is there. She needs a sitter to keep her from crawling out of bed or wandering off. You know that this is because she is out of her element and the safe, known surroundings of her nursing home. Her family is mistrustful of her pureed diet with thickened fluids and want her to be able to “eat what she wants.”

Despite many consultations with the doctors who describe the effects of dementia to safe swallowing, they resist. As staff, you feel you cannot win. Without the specialized diet, she will continue to have repeated pneumonias. The family wants all medical interventions possible forever. “Her mother lived to be ninety-five years old, and Mom always said she wants to live to be a hundred.” What is not explained to them is that their mother is more like her own father who also had dementia. What is not told is that each child of a dementia patient has themselves a fifty-fifty chance of having the disease. This will progress for her despite previously stated goals. Her life in the meantime will consist of hospitalizations and anxiety related to this. The staff realizes that the family “doesn’t get it” and “Don’t they see what is happening and what is going to happen?” and “We are going to have to code her sometime. I hope I’m not working that day!” This is moral angst.

All the while, you cannot help but hold her hand and tell her that she looks pretty today. Even though she is not sure where she is or who you are, this makes her smile as she tells you she is thirty-five during your assessment questions. She is eighty-nine. You are saddened as you squeeze her hand and touch her hair. “Good job. Do you need anything?” Routine care for a routine patient. You feel good that you made her smile, but also know what is ultimately in store for her. You are also somewhat angry at everything it seems. The family that does not understand. The conversations that are not being held. The support that is not offered to her at the nursing home to help to allow her to stay there because she gets so afraid coming into the hospital.

The whole dementia diagnosis that robs people of their abilities and dignity. You have heard stories about this patient. She was a math teacher. A mother. A wife. A daughter. She ran a household and her life. She would have been, by all accounts, dismayed to see herself now. But with her, and all patients we encounter, all she can do is play the cards she has been dealt, with the means to understand how to play them.

What do we do with the feelings that we feel when things are not quite right? One thing, most important, is to not allow these feelings to interfere with our home lives. If you find yourself calling into the nursing unit to make sure so and so is okay, not good. If you think no one can care for them like you can, not good. If you are routinely criticizing the care this patient receives, you need to step back and reflect. As medical staff, we need to be able to empathize and sympathize to be effective care professionals. But in order to protect ourselves, we absolutely must leave work at work and home at home. Otherwise, you will soon burn out. You will lose sight of why you went into this challenging field. You will become ineffective. You will become the person that you fear. Someone who is not in the place where they should be. Someone who is not making a positive difference. Someone who does not foster effective communication, evidence-based care, and holistic support.

So what do you do when you identify these unmet needs and feel powerless, like your hands are tied? We hear, “You can’t talk to the family about that! That is for the doctor to do.” Does the doctor? Does the doctor have a relationship with the patient and their family? Are they even comfortable in talking about what is expected to transpire in time? They are also conflicted. The specialist might want the hospitalist to discuss findings with the patient. The hospitalist is extremely busy with their caseload and thinks that the PCP should be the central conversation holder. The PCP sees the patient one to four times a year and relies on the hospital doctors to inform the patient of new findings. The end result is that no one intends bad outcomes. But it seems that no one takes the responsibility to address all of the patient’s issues. The specialists are concerned with their own area of expertise. The hospitalist addresses the reason that they came to the hospital and intends to cure them of that complaint.

This might mean that someone is admitted to the hospital for pneumonia and associated shortness of breath. That is their main complaint. They also have stage IV prostate cancer with metastasis to the bones and lungs, along with underlying COPD. They are on the ventilator, sedated, and cannot contribute to any discussions regarding their care. The family has talked to all the doctors and are still confused about what to do. The hospitalist says that they can cure the pneumonia and to allow the ventilator for a few more days. The oncologist says that he needs to get over this infection and get stronger to get more treatment. The family is torn. This is an excellent example of where PC shines. They have the time and expertise to allow the family to sort out extremely sensitive decisions that they are asked to make. It would begin with “What did X ever tell you about their wishes? What would they want or not want? This is what each path proposed to you looks like after they are discharged from the hospital. What constitutes a quality of life for your loved one?”

These conversations are supportive and educational only. They are not meant to coerce anyone to make a certain decision. The PC person is a sounding board for questions and fears. The incredible trust that is fostered over the months or years that the person is visited by PC is unique to the medical world. What other specialty sees the person in any environment that they are in? Not to mention the interaction with their family and friends over time. Getting to know their pets, hear the pride in their voice when they describe their children or grandchildren’s accomplishments. Hearing their private regret that they do not see their family often enough because they are too busy.

The beauty of a true PC service is the long-lasting, comprehensive care that is offered to the patient. They are supported when they are feeling ill, when they are holding their own, and all the times in between. The moral distress that medical staff can encounter often stems from the lack of availability of this service for the patients that they inherently know need it the most. They see familiar people progressively worsening in their own disease states, “not getting it” and really kind of hanging out there unsupported. They see patients and their family not understanding that this hospital admission represents their new normal in functioning, appetite, and endurance. Each time they are admitted, they are worse. Families blame medical care or the loved ones, not having heard an explanation that what they are noticing is totally expected and normal. This is not fair to the people that we care for. Medical professionals know it and wish that the patient did too but may not know how to go about getting this point across. PC addresses all these issues. That is not to imply that the family is not informed about issues. Repetition is incredibly important. In discussing disease progression, PC reminds them of prior conversations that predicted decline. PC would then continue the discussion about further progression and the decisions that are approaching regarding medical interventions.

I have heard nursing staff discuss certain patients during the course of their hospital stay, or in a nursing home, or even home visiting nurses. They feel helpless. They know the progression of any given illness and see that the patient is following this expected trend. Often, nursing or therapists do not feel as though they have the authority to discuss testing results or a noted decline. They rely on the doctors to address these issues. And all too often, this is not done. This can be because of a variety of reasons. Certainly not malicious, but not addressed all the same. Remember, though, the doctors may very well have discussed the patients state of health. Repetition is key. Put yourself in the patient and family’s place. The person is changing, and their hope is that the next round of therapy will “get them stronger.” They think that adding nutritional supplement will “get them better.” Maybe temporarily, but the disease will progress despite these attempts.

What is the staff to do wi...