Maggie McKay (Host): Death and dying. It's a hard conversation to have with anyone, but the better prepared you are, the easier it may be. Welcome to Conversations Like No Other presented by Valley Health System in Ridgewood, New Jersey. Our podcast goes beyond broad everyday health topics to discuss very real and very specific subjects impacting men, women, and children. We think you'll enjoy our fresh take. Thanks for listening. I'm your host, Maggie McKay. Today we have with us Maribeth Kearney, Director of Valley Hospice. Thank you for being here today, Maribeth.

Maribeth Kearney, MPA, BSN, RN, CHPN: Thank you for having me, Maggie.

Host: Let's dive right in. How do people who work in Hospice emotionally handle the work they do? It's got to be tough.

Maribeth Kearney, MPA, BSN, RN, CHPN: So the interdisciplinary team that go out into the community to support families and patients who elect hospice care, do take on a lot of emotional stress and compassion fatigue is a real thing. I encourage the team to really understand that the goal of care has changed.

We're not looking to cure. We're looking to provide comfort. And once you understand that your goal has changed, the goal is not to cure, but it's to provide support and comfort at end of life, it's a bit easier to accept, to move a family from point A to point B, to see acceptance, to see understanding at end of life, is the challenge, and it's exhausting.

I encourage breaks, I encourage them to use their PTO time, wisely, and to really embrace the drive time between patients. There aren't too many places in healthcare where you can have a 15 minute break in your car with your music to unwind and relax to prepare for the next visit. And the biggest message of all is to rest. Don't quit. Rest. If it's something that you enjoy, if this is work you feel is meaningful, when you're feeling overloaded, rest and then come back refreshed not to quit.

Host: Good advice. And what is the difference between hospice and palliative care?

Maribeth Kearney, MPA, BSN, RN, CHPN: So palliative care, really addresses goals of care, where a patient or a family or together, the patient and the family, are feeling that their attention is going. Are we still looking at curative measures, are we looking at trials for their life limiting illness?

And it's really addressing the goal of care. It provides comfort care, but you don't need to be at end of life. Palliative care is for life limiting illnesses or chronic illnesses that can become life limiting. Hospice care technically is palliative care, but at end of life. Hospice occurs when there is a prognosis of roughly six months or less for a patient.

And hospice is a very comprehensive service, as well as palliative care is, but we offer a multidisciplinary team approach. Medications are provided under the hospice benefit. Any equipment that's required in the home to keep the patient safe and comfortable is all covered by the hospice team.

We're also available 24 hours a day, 7 days a week, in case there is a problem in the home, there's always a nurse to speak to, to run a question past. And if needed, a nurse can actually go to the home, even if it's two in the morning or on a Sunday afternoon. Our bereavement care follows a family for up to 13 months after the loved one passes. We offer support groups, phone calls from our trained volunteers just to make sure that the family is coping well, they're not experiencing any distress after their loved one has passed.

Host: That's amazing. I never knew that, because we had that once for a family member and that was it, the day they passed away was the last day we heard from them. So I think that's awesome that you follow up for a year. Maribeth, does palliative care always lead to hospice care?

Maribeth Kearney, MPA, BSN, RN, CHPN: Well, I think when you're looking at palliative care and what they do, right, they're supporting patients who are dealing with life limiting illness, whether it's a chronic illness that has become exhausting and symptomatic, or a cancer diagnosis where they are pursuing options and treatments. I think palliative care can always turn into hospice, but it doesn't always.

This is all about choice and not everybody chooses to die on a hospice program. Not everybody requires it. Not everybody believes in the concept. And some people really just want to pursue treatment right to the bitter end, which is their choice. But I think that most palliative care patients could potentially become a hospice patient.

Host: And how can a family speak with a potential patient about starting hospice when that person perceives it as giving up?

Maribeth Kearney, MPA, BSN, RN, CHPN: Yeah, giving up. So, the word hospice has taken a bad rap over the years. And a lot of people feel electing their hospice benefit is giving up. And in my work and the work of some of our liaisons out in the community, we're really trying to arm families and physicians and providers with language to not give that feeling that I'm giving up.

Giving up sounds, weak, right? Coming on to hospice is a choice. And it really takes a brave person to face end of life. So being brave about that, being realistic about what your options are, understanding what your options are and making the best choice for you, for your family, is really the education direction we try to take hospice care into.

I think bringing it up needs to start early. I think just like chemotherapy, just like radiation, just like dialysis is put forth as a treatment option or the next step in your disease trajectory; palliative care and hospice also need to be brought up early so people understand what it is and they know that you don't have to be taking your last breath to come on to a hospice program to really benefit from all the services that we offer.

It's a difficult conversation, but healthcare providers, family members, and patients themselves really need to be brave enough to bring it up.

Host: Here's a tough one. Maribeth, how do you speak to a family when they express they don't want the patient to know they are terminally ill or when the patient isn't clear about what hospice means? What do you say to the family?

Maribeth Kearney, MPA, BSN, RN, CHPN: Many, many times, when I was doing direct patient care in the community, or even now if I'm talking to a family and they'll say, I don't want my mother to know that she's dying. And then you get an opportunity to speak with the mom, the patient, and she says, I don't want my daughter to know that I'm dying.

So everybody usually knows, but nobody's talking about it. So, a good analogy, to just have people understand, right, imagine living with a pregnant woman and you're in a house and this woman's body is changing, her mood is changing, her appetite, her energy level, all of these things are occurring. Everybody sees it, she's feeling it, but nobody acknowledges it.

What does that feel like? And people say, oh yeah, that must be horrible. But that's what's happening when you have someone in your home that you love who's changing at end of life, but nobody's acknowledging it. We're almost robbing the ability to say things that we need to say or to hear things that we need to hear at end of life.

So it's always encouraged. We respect what the wishes are, but hospice workers, we're not going to lie if we're asked a direct question from a patient, am I dying? We will usually say, how do you feel? What do you feel? It's not typical that people feel sick day after day and continue to think that they're getting better.

So they usually know the answer to the question themselves. And then with our social work team, our chaplain, hopefully bringing the patient and the family to a place where they can acknowledge it and talk to one another, about end of life. That's the goal.

Host: And on the other side, how can a patient speak with their family when their family isn't ready for hospice care?

Maribeth Kearney, MPA, BSN, RN, CHPN: That's tough too. Lots of times we'll have especially a, parent, right, and their adult children, they don't want mom or dad to give up, you know, we have to keep going. Facilitating the conversation, especially if the patient is oriented and has decision making capacity for themselves. We really encourage the family to listen to the patient, and to understand that pursuing treatment that is continually making you feel terrible or, clearly not working, or if you're just exhausted, they need to respect that and understand that this is a decision. It's not giving up. It's changing the focus of care.

Host: How do you talk to patients about end of life? That's got to be one of the hardest things you do.

Maribeth Kearney, MPA, BSN, RN, CHPN: I think that the team really allow the patient to do the talking. It's really kind of supporting a patient where they're at in the moment. Sometimes they want to talk about it. Sometimes they have lots of spiritual needs that maybe are coming up. Sometimes there's guilt, or fear, and we let them talk and the fact that hospice is so multidisciplinary is really a benefit, because we can call on the experts to come in to assist with facilitating whatever the patient is feeling at that time.

So it's really meeting them where they are and understanding what they already know and knowing what their expectations are of the team.

Host: Why do you think people wait to start hospice?

Maribeth Kearney, MPA, BSN, RN, CHPN: I think people don't understand what it is. And I've been doing this for almost 30 years now and I'm not really sure when everyone's going to catch on to what it is that we do because I feel like I've been educating the community my whole life. I think word of mouth, is our best, way of communicating what hospice does, right?

It's your neighbor who had it for their husband or, a friend of a friend who had it and they had a wonderful experience and, oh, they had an art therapist come and music therapy and, it was just wonderful and the quality of the time we had with dad was so great. I think people hear that and I think communicating on a very basic level, and educating the community is really where we need to stay.

Providers, physicians, nurse practitioners, they have a basic understanding, some are more than others, but educating and arming the community so you know this is an option for me. You can bring it up. If you have a life limiting illness that you're battling, working toward a solution for your care, you can bring this up.

It doesn't have to come from the physician. The patient and the family can actually bring that up. And I think focusing on that is the best route.

Host: Let's talk about morphine. What is the purpose of it and what does it do to the body? Does it hasten the dying process?

Maribeth Kearney, MPA, BSN, RN, CHPN: So morphine, another word that has a bad rap. Everyone's afraid of morphine. Hospice providers utilize morphine for a couple of reasons. Number one, it's a medication that can be concentrated, concentrated to a high amount in a very little amount of liquid. So typically at end of life, patients are having a difficult time swallowing medications.

So this is something that can be concentrated into a small amount of liquid and it's put under the tongue and it's absorbed into the mucosa in the mouth. So in that respect, it's wonderful. It also masks pain. So, patients who are having pain from their disease or the dying process, morphine can be titrated to an amount to keep the patient comfortable, and there's no ceiling to how much can be given.

So it started at a very low dose and depending on the patient's response, the medication can be increased with the direction of our medical director, to achieve a level of comfort. It also lowers the respiratory rate. So lots of people hear that and think, well, that's not good. We don't want the respiratory rate to be lowered.

But during the dying process, it's very common for the respiratory rate to increase, to go above 20 breaths per minute, which is not comfortable. We want that to be lower. It's kind of like running on a treadmill. Imagine huffing and puffing for hours and hours, sometimes days. That's not comfort. So we want to give low dose morphine to achieve physical pain relief and to lower that respiratory rate.

Host: And I guess something a lot of people ask, what does the dying process look like? Because a lot of people haven't been in that situation. How do you support the patients and the families and what happens right after somebody dies?

Maribeth Kearney, MPA, BSN, RN, CHPN: The dying process is different for everybody. There are patients who are very peaceful and kind of drift off in their sleep and then there are others that you're watching the decline and changes in the person for two weeks sometimes, which is very difficult for the families. It really depends on the illness. Age plays a big part in how the patient dies. We have a book that we share with families when we admit them. And then when the nurse and the social worker identify that the patient is approaching end of life, we review the book again. And it's not usually, like a ski slope, a complete downhill, for the patient.

Sometimes it's a roller coaster. There are ups and there are downs and those ups and downs you start to see sometime weeks ahead. And you can prepare the family. The actual dying process many times it looks like running on a treadmill, like I mentioned. Very similarly, you perspire, your heart rate elevates, your respiratory rate increases, your blood pressure gets a little lower.

And it's you know, your body trying to compensate for the decline. Patients usually stop eating and drinking, days, sometimes a week prior to death. And this is very normal. And that's difficult for families to recognize because it seems so abnormal, right? We associate health with food. Mom has to eat. I have to give her fluid. But when your body's not functioning like you or I, it has nowhere to go. So if you're putting food into a body or fluid into a body that's not able to utilize it and process it, sometimes it can cause more symptoms and more distress than any good that could happen.

So, once a patient is in these last few days of life and we're seeing these signs and symptoms, the hospice team is making daily visits. We have 24 hour on call service, so the family can reach out if there's a new symptom that comes up or they're seeing something that's making them anxious. They really just need to understand what's happening. We can send a nurse out to the house if needed. And then when the patient does pass, the hospice team is notified, the nurse goes to the home, does a pronouncement, we do some bathing, combing hair, tidying up the room, making the body presentable, and explaining to the family, what the next steps are.

And also acknowledging that this family was able to do this. This is not an easy thing. These are not medical people, typically, and you just cared for someone you love in your home. That's tough, and acknowledging a family that they're doing this and they did a great job is so important.

And then from there, the funeral home is notified and it's a peaceful transition from home to whatever arrangements the family and the patient had arranged, for the patient. And then after that, the team is calling. We're doing bereavement follow up, Maggie, like I said, for the next 13 months.

Host: Wow. Yeah, I think it's good to be warned of all the things that are going to happen because, I think the more you know, the better, right?

It sounds like you guys have it covered for sure that you tell them everything ahead of time. That's got to make it easier. And that's so nice that you acknowledge, that they did a good job and they were able to do that because not everyone has that luxury, I guess you'd say,

Maribeth Kearney, MPA, BSN, RN, CHPN: Yeah. And every situation is so different. Every household is different. We all have different dynamics in our homes and our team is literally invited in. This is such a sacred time. We're invited in. We see families in their pajamas and dishes in the sink, right? We see people crying, we're on their territory. So that's an honor.

Host: Well, thank you so much for sharing your expertise and all this knowledge is so good to know on this sensitive topic and for the work you do on your team. We appreciate it.

Maribeth Kearney, MPA, BSN, RN, CHPN: Thank you. Thank you, Maggie.

Host: Again, that's Maribeth Kearney. For more information about hospice care at Valley, please visit valleyhealth.com/hospice or call 201-291-6131. That's 201-291-6131. And if you found this podcast helpful, please share it on your social channels and check out our entire podcast library for topics of interest to you. I'm Maggie McKay. Thanks for listening to Conversations Like No Other, presented by Valley Health System in Ridgewood, New Jersey.

For more information on today's topic or to be connected with today's guest, please call 201-291-6090 or email valleypodcast@valleyhealth.com.