*This article contains references to death and grieving, which some readers may find upsetting*

By Cathy Miller

This story is meant to be enlightening, eye-opening, and even uplifting. (Who doesn’t have a bit of trepidation about the end of life?) Hospice offers guidance and support in a time of worry and sadness, with a goal of comfort care rather than medical intervention. It allows this final transition to be both natural and consoling for patient and family.

FATIMA LAINEZ, RN, a case manager with Karen Ann Quinlan Hospice, is an ideal representative of the organization and its objective: For an individual to live the best quality of life throughout the dying process. She resides in Oxford and cares for patients primarily in Phillipsburg, Stewartsville, Washington and Oxford.

Fatima’s path became clear at a young age. She said, “I always wanted to be a nurse, ever since I was a kid.” She added, “When I got out of high school, to be honest, I was kind of lazy to go to school,” but her passion led her to earn her CNA (certified nursing assistant) straight out of school. She worked as a CNA for about seven years.

Her first job as a CNA was at Paragon Village in Hackettstown. “It’s assisted living, but we had a lot of patients who would come on hospice,” Fatima explained. “When it reached the point that they didn’t want to be seeing the doctor all the time, and just wanted to be comfortable, [the doctor/facility] would put them on hospice if the family was in agreement.”

Fatima became close with one of the nurses at Paragon practicing overnight vigils with patients. She explained, “If a patient was uncomfortable and needed one-to-one care, [the nurse] would sit with them all night and administer medications to make them more comfortable.”

After finishing her shift, Fatima would spend time with the nurse on vigil. “I’d work through till 11, she’d come in at 7, so when I was done with my patients later in the night, I’d just go and talk with her.” A lot of the patients she sat with were patients of Fatima as well. She adored the fact that this nurse was “helping them through a part of life that everybody has to go through. It’s inevitable – we can’t do anything to stop it – and she was making a difference in that moment that is so difficult.” The vigils left a lasting impression on Fatima, and she still speaks with that nurse.

Fatima didn’t become a hospice nurse right away. She went on to work at both Hackettstown Hospital and Hunterdon Medical Center. She admits, “I always loved what I did, I never did not like my job,” but ever since she was a young CNA, she knew sitting with the patients was a profound act. She recalled those who were admitted to the hospital, more or less, just to die, “I would always want to hold their hand, to be there. I never wanted them to feel alone, because it could be a very scary time for them. It means a lot that you can be there, even just to hold their hand, even if they don’t know who you are.”

She returned to school, earning her LPN (licensed practical nurse) at Warren County Technical School’s Adult and Continuing Education program. She then worked in a nursing home for a while.

In August 2018 her grandmother got very sick. Her failing health persisted, even after hospital admission. When her doctor suggested hospice, the family signed up with Karen Ann Quinlan Hospice. It was that moment when Fatima admitted to herself, “I’ve got to do this, I really want to do this.” She got to know the supervisor during that period, and after her grandmother’s passing, told the supervisor, “I really want to be a part of the team if you have a place. They took me right away. All through RN school I worked there.”

The nurses were incredibly helpful. “I never felt like I was all on my own. I used to joke, it’s like my supervisor was swaddling me. In fact, she was teaching me the job and she’d tell me everything I needed to know, how to do it exactly. That’s how I learned. She was teaching me slowly all the while I was an LPN.”

Fatima earned her RN (registered nurse) from Raritan Valley Community College. The transition from LPN to RN was difficult because there’s so much more responsibility. But as Fatima added, “I also went from an LPN to a case manager. As a case manager, you’re managing the entire [patient care plan].” She enters every situation gauging, “Does the person need a volunteer, does this person need spiritual support. You’re not just looking at the nursing. You make recommendations to the social worker if the patient needs more care or the caregiver is becoming overworked or stressed. The [health] aide is the one who’s seeing the patients the most. You’re like the pack leader, you’re the one making decisions. I call the social worker if I think they need something. I call the chaplain if they start telling me they’re scared to die, or they never made up with their daughter, or what if they don’t go to heaven, things like that. The chaplain can address those questions in a way that I can’t.” Fatima works with a team to meet the patient’s physical, emotional and spiritual needs, while they live with dignity and free of pain.

Fatima has picked up so much from all the nurses she’s worked with, she said. Book smarts are one thing, but actual experience is immensely meaningful. “There are many more ways you can be of help [to the hospice patient]. It’s different than the hospital where you’re running from room to room to care for different patients. You can give the hospice patient personalized care.”

She conceded, “Sometimes you come across people who are angry that they have to [go on hospice], even though you’re the one coming in to help them.” Even though the patient may feel that way, she added, “Hospice is not about giving up, it’s more about that moment when a patient decides they don’t want to be poked and prodded anymore. They want to be at home and comfortable.” She firmly believes, “The way you [explain it] to people is very important. It makes a world of difference the way you say it.”

One facet of hospice sometimes requiring clarification is the term “stopping aggressive treatment.” The patient should understand the reasoning when their doctor opts to discontinue an aggressive treatment, such as chemotherapy. “It only works to a certain point, and after that it just does harm,” Fatima said. “I love a doctor who can actually sit their patient down and tell them that ‘at this point the treatment is not helping, and you should come on hospice before you get sicker.’ When the person comes to us at a time when they’re still able to do the things they enjoy, the chemo didn’t hurt them that much. The problem right now is that the patient is [often] referred to hospice too late and they’re already too sick. If we could get more people to come before that point, when they’re still able to function like they were before, I think they’d have a better outlook on hospice.”

It makes sense. “Patients tend to live longer than if they were just getting pumped with stuff, and dealing with the side effects of treatment,” Fatima noted. She spoke of one patient, “who goes to the casino on weekends. I love that they can do that.”

She explained, “The way chemo is looked at is that’s what’s going to cure you. You’re going to get better … but [if you’re not getting better], you can stop it, heal your body and be comfortable in your house. That’s what I wish for people.” It bears repeating that when they come to hospice earlier, the patient is better able to live life as they’re accustomed and gradually ease into hospice care.

Fatima usually visits four patients per day. If one is ill, she’ll call her supervisor so she can go there first. She described it as “triaging. If a patient is stable, I’ll visit them later, or the next day, but go visit the one who needs more attention right now.”

She participates in biweekly meetings with the medical director of Warren County Hospice, all the nurses, the social worker, the volunteer coordinator, and the chaplain. Fatima described the meeting: “It starts off with the chaplain saying a prayer for all the patients we’ve cared for, and for the nurses and their ability to take care of everyone. Then we discuss the patients individually and talk about their symptoms, what can we do better, do they need a volunteer, do they need social work to come in, do we need the chaplain to come in and pray with them, what kind of medications do they need to feel more comfortable.”

Besides being essential to keeping everyone current, Fatima considers this regular meeting as another opportunity to learn. “You’re talking in front of all the nurses, so the experiences are shared. You find out what’s worked. Because I’m new, sometimes I’ll call them about something [out in the field] and they’ll tell me, ‘oh, this is what I did.’ It’s so nice to have a team where you can talk about everything!”

People used to be embarrassed about using hospice, and to a lesser degree, that’s still true. Fatima said, “I hope we make bigger strides with that because too often I hear misconceptions. I think the best thing we can do is word-of-mouth, families experiencing hospice and sharing their story with other people. This is a known fact: doctors should become better educated on when to refer a patient to hospice because then we could really ensure more quality of life. We have some great doctors who refer patients at the right time, and we get great results.” If the doctor refers them to hospice early enough, they will have time to enjoy their life while adjusting to what’s happening. It’s important to educate a lay person about this – the internet isn’t necessarily the best source of medical knowledge.

Fatima also talked about another big concern of hospice patients. “As soon as someone hears the word ‘morphine’ there’s a negative reaction.” They fear morphine will cause them to die. She explained, “If you’re going through a lot of pain, you’re given morphine. Pain is relieved by opiates, and morphine is an opiate. It’s used to comfort the patient in great pain.”

She gave an example. “Let’s say you have a cardiac or COPD patient. A lot of times those people feel constantly out of breath. If they do any little thing, they feel exerted and exhausted and get short of breath. Morphine is what we use for that feeling. It … helps them breathe easier.”

Breathing issues are a common symptom of patients at end of life, particularly rapid breathing, which can be very uncomfortable. Morphine can help slow that breathing. Sometimes, this idea of slower breath worries the patients, but the painkiller won’t kill them, just ease their symptoms. In fact, there are many fears and stigmas associated with painkillers that patients bring with them to hospice, including fear of addiction. “I explain they can’t become an addict. … an addict is addicted to the high. If they’re in pain, they’re not looking for a high, they’re looking for pain relief. Their body will become dependent on morphine because that’s what opiates do. But are they looking for the high? No, not if they’re in pain.”

So what skills make a good hospice nurse? Without hesitation, Fatima replied, “Strong assessment skills. As a nurse, our nature is to assess a situation. This is especially important in our field because a lot of times people don’t tell us how they’re feeling. The don’t tell us they’re in pain. Or they have dementia and they can’t. So, you’re automatically assessing. You’re assessing the caregiver because you want to see that they’re ok. You want to see that they’re not strained or have too much on their plate. We’re supportive care, but they’re the main caregivers. We’re there to teach them to do the things that we’re not going to be there to do 24/7.” She made it clear, “The ability to assess the patient, caregiver, family, and the entire environment has to be strong.”

She added that clinical skills are also imperative. “You have to be able to identify symptoms and how to treat them. You’re like the doctor’s eyes because they’re not seeing [the patient]. Most of them don’t come to the house, so you’re calling them [to relay information]. You must establish a relationship with each doctor because every patient has a different one. The doctors have to trust that you’re doing your job, you know what you’re doing, and that they can depend on you.”

She also said that acquiring knowledge through practical experience, as well as the classroom, is important. “In nursing school, you really don’t learn about hospice. Nursing school doesn’t teach you everything. You need an abundance of clinical knowledge – being in the hospital and seeing what everything looks like, what the progression of a person’s disease looks like, so you can prepare the family. You have to know what a decline looks like, observing the patient every few days, and noting if there’s a difference in them and identifying it.”

But hospice care is about more than just the patients. It’s also vital to have “the ability to prepare the family. Everyone is at a different stage of grief, some aren’t even grieving yet, they’re still hopeful that he’s going to get better. You have to identify with each of those people. If they’re not ready, they’re not ready. You can’t make them ready.”

“I always say ‘we’re never going to give up.’ You keep reassuring – we are not giving up, that’s not what we’re doing, but we are changing our thoughts. We’re not going to the hospital to be poked and prodded. We’re not going to perform CPR if you don’t want us to. Or you can go back and get chemo anytime you want. You don’t have to stay home. It’s up to you, what you want.”

How do you deal with imminent death, while helping the family at the same time? Sometimes Fatima knows it’s ok to cry, there are other times when she knows it’s up to her to present a strong front. Essentially, it’s a balancing act. “That’s a situation you have to feel out individually,” Fatima explained. “Sometimes you go in and the whole family is surrounding the bed and they’re holding his or her hand and they’re really involved. Then there are times when they’re not in the room, they don’t want to see. A lot of times they don’t want to remember the family member like that. I can put myself in a situation and understand why that person’s behaving in a certain way. Sometimes I resonate with their actions.”

Fatima talked about the importance of communicating with the dying up until the very end: “If the patient is sitting and the family member appears to be afraid to get too close, I explain that the patient can hear them even though they’re not answering. They’re too weak to answer, they’re in a sleep and can’t be roused any more, but they can hear. Hearing is the last sense to go. So, tell them what you want them to know. Tell them that everything’s going to be ok, that you’re going to take care of whoever it is they’re afraid to let go. A lot of times patients are hanging on because they really want to be there for their son, daughter, husband or wife. I encourage [that family member], if they can, to sit next to them and let them know that they’re there, that they’re going to be ok, and that it’s ok. Sometimes they just can’t do it, but that’s ok, too – everything is ok. I can’t define how you’re going to grieve, I can’t say that any form of grief is right or wrong, you’re going to grieve the way you’re going to grieve and we will get you through it.”

Fatima deeply encourages each family to communicate with their loved one because it actually does help. “I’ve seen patients that are hanging on, they can’t let go. They haven’t eaten in weeks, and they haven’t drank in a long time – and the family asks why are they suffering, why are they doing this? I’ll ask, ‘did you talk to them, did you tell them it’s going to be ok?’ Sometimes you just want to say ‘please don’t leave me’ but you shouldn’t, you have to be selfless, if you can, and just tell them it’s going to be ok. I’ll ask if all of the family members that the patient would want to see came to say goodbye. Usually that’s one of the things, somebody hasn’t arrived yet.”

Fatima recalled a patient in a nursing home, hanging on by a thread. The patient’s son brought their cat to visit, and hours later the patient died. They were waiting to say goodbye to their cat! “A lot of times you see that happen. Or they’re waiting for the grandkids to arrive, that’s what they want, and then they go peacefully.”

As for closure with the family of a deceased patient, it can take many forms. Fatima was recently invited to a wake. She had grown very close to the patient and his family and they really wanted her there. When she walked in, she was greeted by all thirteen children. They cried; she cried, too. It was a fitting way to say goodbye and conclude the nurse/patient relationship
Owing much appreciation for her candor and dedication, this interview developed into a deeply moving and highly informational conversation with Fatima Lainez, RN, about her work with hospice patients here in Warren County. She drew back the curtains on a very personal time in someone’s life and thoughtfully illustrated just how warmly the sun can shine in a time of darkness.

If anyone is interested in entering the field of hospice care, a good place to start is to volunteer with Karen Ann Quinlan Hospice. They provide training sessions that certify volunteers to work directly in the patients’ homes. There are also opportunities to volunteer in the office and at special events. For more information visit www.karenannquinlanhospice.org

The Karen Ann Quinlan Memorial Foundation is passionately dedicated to providing hospice care for the terminally ill and bereavement counseling for those who have lost loved ones. Serving Sussex and Warren Counties in New Jersey and Northeastern Pennsylvania, call 800-882-1117 to reach any of their services at either office: Karen Ann Quinlan Hospice, 99 Sparta Ave., Newton, N.J., and Karen Ann Quinlan Hospice, 104 Bennett Ave., Milford, Pa.

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