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Maintaining quality of life during a serious illness—or planning for end of life care—can be a tough emotional journey. This holds true whether this care is for yourself or a loved one. Luckily, there are healthcare professionals with experience helping people navigate this journey every step of the way. Laura Hoeksema, MD discusses what you can expect from hospice and palliative care—and why both kinds of care provide such comfort.

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Hospice, Palliative Care and End of Life Dignity with Dr. Laura Hoeksema

Podcast Transcript

Intro:
There's so much health advice out there, lots of different voices and opinions, but who can you trust? Trust the experts, the world's brightest medical minds, our very own Cleveland Clinic experts. We ask them tough, intimate health quest, so you get the answers you need. This is the Health Essentials podcast brought to you by Cleveland Clinic and Cleveland Clinic Children's. This podcast is for informational purposes only and is not intended to replace the advice of your own physician.

Annie Zaleski:
Hello, and thank you for joining us for this episode of the Health Essentials podcast. I'm your host, Annie Zaleski. And today we're talking about hospice and palliative care and end of life dignity with physician Dr. Laura Hoeksema, Cleveland Clinic's Lois U and Harry R. Horvitz Palliative Medicine Program. Maintaining quality of life during a serious illness or planning for end of life care can be a tough emotional journey. This holds true whether this care is for yourself or a loved one. Luckily there are healthcare professionals with experience helping people navigate this journey every step of the way. Dr. Hoeksema is here to talk about hospice and palliative care and what to expect from both types. Dr. Hoeksema, thank you for being here to talk about these important topics.

Dr. Laura Hoeksema:
I'm really grateful for the opportunity to be here today.

Annie Zaleski:
So let's start off first off, tell us what palliative care is.

Dr. Laura Hoeksema:
Yeah. So palliative care is really specialized medical care for people living with a serious illness. It's focused on providing relief of symptoms and the stress associated with the illness. And the goal is really to improve the quality of life, not only for the patient, but also for their loved ones, what we refer to as the unit of care. Palliative care is provided by an interdisciplinary team of doctors, nurses, social workers, chaplains, and other colleagues who work together with a patient, their family, and their other doctors to really provide an extra layer of support. It's appropriate at any age and any stage of a serious illness and can be provided along with curative treatment.

Annie Zaleski:
So when you say serious illness, what are some examples of that? Who typically benefits from this kind of care?

Dr. Laura Hoeksema:
Yeah. So patients who have advanced cancer, patients with heart failure, patients with Alzheimer's disease. Pretty much anytime there's a patient who's really suffering as a result of a serious illness. And we recognize that serious illness affects patients physically, but we also know that a serious illness really affects patients and their families emotionally, spiritually, and socially, and our team is available to really help support patients and their families as they navigate some of the challenges that result from serious illness and really to also help improve the patient's comfort if the patient's having symptoms.

So the palliative care team really supports patients by relieving symptoms, by helping patients better understand their illness, really clarifying treatment goals and options that are available, supporting a patient as they learn to cope with their illness, assisting patients with making medical decisions and really coordinating care with other physicians who are caring for the patient.

Annie Zaleski:
So it's sounds like that whole team approach is a really big advantage because if you're able to get all sides of a person and all facets of a person then, are there other advantages then to having multiple people involved in this type of care?

Dr. Laura Hoeksema:
Yeah. Yeah. And I really think there are. I think a serious illness just really affects patients in all of those areas of life. And so having different members of the palliative care team who can really address not only those physical symptoms, but also address the emotional impact and that spiritual impact as well that patients experience as a result of the illness.

Annie Zaleski:
So are there other typical doctors that are involved in palliative care or does it differ from patient to patient?

Dr. Laura Hoeksema:
Yeah. And so I think in terms of the doctors that are involved, there are palliative care physicians who have a unique expertise in managing symptoms and providing guidance through the patient serious illness. Other members of the patient's care team, there are other physicians involved. So it could be the patient's cancer doctor or their primary care doctor, their heart doctor, their kidney doctor who's also involved in really developing that plan of care for the patient.

Annie Zaleski:
So you said this can be offered at any time then. And so when should people be offered this? When does someone know that it's time or they could really benefit from this?

Dr. Laura Hoeksema:
Yeah. And so I think when patients are really experiencing complex medical needs or symptoms along with psychological and social challenges, it can really be beneficial to have this comprehensive care provided by the palliative care team. And so palliative care can be helpful if you find yourself having thoughts like, "Is this the right treatment for me? Or I wish my pain were more well controlled or my illness is changing my life and it's really hard to accept this, or I wish I knew more about what might be coming in the coming months."

Annie Zaleski:
That's great. So it's not just what's going on right now, but it's really helping people prepare for the future as well.

Dr. Laura Hoeksema:
Yes, it definitely is. And I think really for our team to provide some of that anticipatory guidance... We care for patients with serious illness every day and so we're able to provide some unique insight and understanding for patient who are experiencing the serious illness for the first time.

Annie Zaleski:
So is there a typical length of time someone is in palliative care or does it also vary from patient to patient?

Dr. Laura Hoeksema:
I would say it really varies from patient to patient. We have some patients who receive palliative care for weeks, others for months, and some patients for many years.

Annie Zaleski:
So keeping in mind that this is tailored to an individual needs, can you give us an example of what this looks like in practice?

Dr. Laura Hoeksema:
Yeah. And so I think one of the benefits is that we provide palliative care in a variety of settings. And so this includes the hospital, the outpatient clinic setting, and also at home. And so first of all, we really identify which setting will meet the needs of a specific patient. And then our palliative care provider will coordinate a time to meet with a patient and really spend some time learning about who the patient is as a person, what's important to the patient and what symptoms the patient's having in addition to what other questions the patient might have about their illness.

If the patient is making decisions about next steps in their medical treatment, the palliative care provider can really talk through these decisions and provide helpful information so the patient is making fully informed decisions. If a patient's having uncontrolled symptoms, the provider can make adjustments to medications and provide guidance about ways to improve comfort. So really together the patient and provider will develop the best plan of care for that patient.

Annie Zaleski:
That's really great because if someone has an illness or they're just not feeling great, that can really feel out of control. So being able to sit down and have a plan and have someone on your side must be also just so valuable.

Dr. Laura Hoeksema:
Yeah. Yeah. I think it really is. And someone, like you said, just to walk with you on that part of your journey, I think is so helpful.

Annie Zaleski:
So I want to switch over and talk about hospice care, what is this?

Dr. Laura Hoeksema:
Yeah. And so when patients have a serious illness, I've seen times where the illness itself becomes the primary focus in the patient's life and time and energy are really invested in treating the illness often waiting for the results of tests to look to see if things are better or worse, waiting to see if the treatment has been effective, spending time in the hospital. And sometimes it can feel like everything revolves around the illness. With hospice care, the patient as a whole person becomes the primary focus and the patient's illness almost fades to the background in some respect.

Our hospice team really focuses on what's most important to the patient and how and where the patient wants to spend their time. We also really focus on controlling symptoms so that the patient can be fully present in their life and can enjoy experiences that are important to them. Hospice is appropriate when curative treatments are no longer beneficial or when they become too burdensome and life expectancy is measured in months rather than years. Our hospice team assists patients and families in preparing physically, spiritually and emotionally for end of life. The emphasis is on comfort and helping patients maintain control of their lives.

Annie Zaleski:
So which members of the healthcare team are involved in hospice care?

Dr. Laura Hoeksema:
Yeah. So I think in terms of the members of the healthcare team that are involved in hospice care, we have this unique expertise and members of our team consist of physicians, registered nurses, home health aids, social workers, chaplains, and volunteers. And our hospice team meets regularly to develop a unique plan of care for each patient and their family. And as the patient's needs change, our team adjusts the plan of care. After a patient dies, the patient's family also receives 13 months of bereavement support from our team.

Annie Zaleski:
So I read that there are four levels of this care then, what are those four levels?

Dr. Laura Hoeksema:
Yeah. So routine home care for hospice is the most common level of hospice care. And this is when patients are cared for at home and they receive regular visits from members of our hospice team. And home may be a private home, an assisted living facility, a hospice facility or long-term care facility. The home is wherever the patient lives. Respite care is when patients receive hospice care in a facility for up to five days. And this is really an opportunity to give the caregivers a rest. And so we'll sometimes see that families will use respite care if they're traveling out of town for the weekend and the patient isn't able to travel with them.

The other two levels of hospice care are for patients who have uncontrolled symptoms. So continuous home care is for patients who have uncontrolled symptoms and have more intensive nursing needs and their desire is really to stay at home. And so our team can provide that extra support to get them through that symptom crisis and to get them more comfortable. And the fourth level of care is general inpatient care. And this is when a patient receives care in a facility to manage their symptoms that aren't able to be controlled at home. And the goal of this type of care is to get the symptoms under good control so that the patient is comfortable and then for them to return home.

Annie Zaleski:
So it seems like palliative care, hospice care also has multiple goals then, and it's really tailored to whatever's going on in the person's life at that point.

Dr. Laura Hoeksema:
Yeah, it really is. And I think that's really one of the strengths of both hospice and palliative care, is really developing a unique plan of care for each patient based on their unique needs and the needs of their family.

Annie Zaleski:
What are some of the biggest differences then between palliative care and hospice care?

Dr. Laura Hoeksema:
Yeah. So I would say with hospice, the plan of care is comfort-focused instead of disease-focused and the patient's prognosis is six months or less if the disease takes its normal course. And the focus is really on that comfort and really helping the patient have the best quality of life. Palliative care is for patients with serious illness and it can occur alongside curative or disease-directed treatments. And the focus is really on improving symptoms and quality of life and supporting patients as they make decisions about their medical treatment and a patient may receive palliative care for weeks, months or years.

Annie Zaleski:
In terms of hospice care then from a healthcare perspective, are there the same doctors that are involved in palliative care, are there different ones, are there additional healthcare professionals that get involved? What does that look like?

Dr. Laura Hoeksema:
Yeah. And so I think in terms of hospice and palliative care, there are physicians who are trained in both, in hospice and palliative care. And so some physicians practice primarily palliative care, some physicians practice primarily hospice care. And so I think that's depending on what physicians find most fulfilling.

Annie Zaleski:
So this is obviously, I'm guessing a very tough decision then, but how do you know that it's time to transition into hospice care and how does that conversation start?

Dr. Laura Hoeksema:
Yeah. And so patients, I think start to think about hospice care when prognosis is measured in months instead of years, when the patient is no longer benefiting from curative treatments or when treatments are becoming too burdensome without significant benefit or when a patient has a desire to really shift the primary focus of care to focusing on their comfort. And in my experience, caring for patients near the end of life, a person's values often become very clear.

So if I were to tell you today that you have a few months left to live, you may choose to spend your time very differently than you're currently spending it. And there may be certain things that you wish to accomplish, places you wish to visit, people you want to see, your conversations you want to have, and hospice is really about supporting patients and their families so patients can have the best quality of life and accomplish things that are important to them.

Annie Zaleski:
Wow. That's very powerful.

Dr. Laura Hoeksema:
Yeah. Yeah. I think it is. And I think it's really incredible to be able to care for patients in hospice and to really support them during a difficult time.

Annie Zaleski:
So when someone transitions to receiving care by a hospice team, then what should they expect?

Dr. Laura Hoeksema:
Yeah. So one of our hospice nurses will visit the patient and their loved ones and really talk with them about hospice care and the support that's provided by our team. If the patient says, "Yes, I would like to receive hospice care," the nurse will review the plan of care including medications with a hospice physician and will coordinate for medical equipment like a hospital bed, bedside table, and oxygen if needed to be delivered to the home. The hospice physician will order medications to be available just on an as needed basis for symptoms that the patient may develop.

And other members of our hospice team including our chaplain and social worker will visit the patient to identify how they can be most supportive. And a hospice physician can visit the patient at home if the patient's having symptoms or if the patient has medical questions and would benefit from guidance and support.

Annie Zaleski:
So you mentioned that hospice care can take place in different places then. So in what ways does hospice care at home maybe differ from hospice care anywhere else?

Dr. Laura Hoeksema:
So for patients receiving hospice care at home, the care is really provided by the patient's loved ones or sometimes by hired caregivers. So this includes giving the patient medications and as the patient gets weaker, helping with activities like eating, walking, or bathing. When a patient receives hospice care in a facility, the staff members at the facility would be the ones who are giving the patient medications and would help the patient with those activities like bathing and eating.

Annie Zaleski:
That makes sense. You mentioned that people there transition into hospice care, they might start talking, having different conversations with people, maybe traveling and so speak a little bit to why hospice care is so important to preserving dignity at the end of someone's life.

Dr. Laura Hoeksema:
Yeah. And I think with hospice we really focus on caring for the patient as a whole person and really understanding more about who that patient is, and what's important to them and really helping them attain whatever goals they have that are important to them as their life comes to a close. And our goal is really for patients to have as much control as they can over how and where they spend the last months of their lives. And each person is unique and they have their own story. And I would say the best part of my job is just really listening to patients share their stories, sharing what they love, what motivates them, just sharing wonderful memories and experiences they've had throughout their lives. I think also sharing concerns or worries or fears that they have.

And that really allows our team to really help address those fears and those worries. Each person we care for is so unique and there's no other patient I will ever care for who is exactly like the patient sitting in front of me. And our hospice team really recognizes the uniqueness of each person we care for. And we recognize the privilege of being invited into a patient's life at such a challenging time.

Annie Zaleski:
Just having that respect as well for someone obviously I think is also so powerful and so valuable to them as well.

Dr. Laura Hoeksema:
Yeah. Yeah. I agree. And I think that's something that we respect our patients throughout the entire continuum of their lives, from the time they're born until they die.

Annie Zaleski:
So you touched on this a little bit, having a serious illness can be difficult and hearing that you might need to transition into hospice care or even palliative care can be scary. What are some helpful things you can say to someone who might be going through this?

Dr. Laura Hoeksema:
Yeah. And I think it can be scary to have a physician or a friend recommend palliative care or recommend hospice. And sometimes I think people have heard things about palliative care or hospice, and there may be misunderstandings about what they are. I think hospice and palliative care are both really focused on providing an extra layer of support, controlling symptoms and providing guidance. Our hospice team spends a lot of time educating patients about what to expect in the weeks and months ahead so that the patient and family can be prepared.

When I think about the support a patient receive from our hospice or palliative care team, I really wish that every patient with a serious illness would have this comprehensive patient-centered support. I see the care that my colleagues provide for patients each day. I see my colleagues help patients navigate complex decisions. I see them improve a patient's comfort. I see the guidance that my colleagues provide to patients and their family members and it's really remarkable. And I wish that every patient with a serious illness had the support.

Annie Zaleski:
Yeah. I think that's a good point that it's good that the family also is involved and can help make those decisions together because that helps them have some power as well in a very difficult time.

Dr. Laura Hoeksema:
Yeah. Yeah. I agree. And I think that is so important. And I think really recognizing that that unit of care is the patient and family and recognizing that they're all affected by the serious illness, and so that there are some unique needs that family members also have as they're coping with the patient's illness. And our team is really able to provide that support for the family as well.

Annie Zaleski:
At what point would a healthcare team make the assessment that a patient would be better receiving inpatient hospice care versus hospice care at home?

Dr. Laura Hoeksema:
Yeah. So if a patient is having uncontrolled symptoms and those symptoms could be pain, shortness of breath, nausea, vomiting, restlessness, or agitation. And if a patient has those symptoms and our team works to get them under good control at home, but the patient is still having uncontrolled symptoms, then the patient would be able to receive inpatient hospice care so that our team can really keep a closer eye on them and get those symptoms under good control very quickly.

Annie Zaleski:
Where do people receive inpatient hospice care in the Cleveland Clinic system?

Dr. Laura Hoeksema:
So I think in a variety of places, so sometimes at home. We do have an inpatient hospice service at main campus. So for patients who have uncontrolled symptoms, we are able to admit them to hospice and they do receive care at main campus. We also have a hospice facility down in the Akron area called Justin T. Rogers. And so we have patients who receive care there and then patients who receive care at local nursing facilities as well.

Annie Zaleski:
If you have someone who's receiving hospice or palliative care, are there things that are not helpful to tell this person?

Dr. Laura Hoeksema:
Yeah. And so I think there are some myths or misunderstandings about hospice care. I think it's important to know that hospice is not giving up. Hospice is really about shifting the focus to comfort and quality of life as the primary goal, instead of focusing on the illness. And the focus is on really developing a comprehensive plan of care to address the physical, emotional, and psychological needs of the patient and their loved ones. I think it's also really important to know the difference between palliative care and hospice and knowing that palliative care is for patients with serious illness and that patients may receive palliative care for years is really important.

Annie Zaleski:
I was going to ask what other misconceptions there are. And I think those are some very important ones, so I'm really glad you mentioned both of those things.

Dr. Laura Hoeksema:
Yeah.

Annie Zaleski:
So if you need to look into either a hospice or palliative care options, what resources are available to help you along the way?

Dr. Laura Hoeksema:
Yeah. And so I think one good resource is a website called getpalliativecare.org, which is really helpful in just providing an overview of what palliative care is and what hospice care is, and really addressing some of those frequently asked questions about both types of care. And so I would say that that's a good starting resource if people are interested in learning more about either.

Annie Zaleski:
So is there anything else you want to add that we haven't talked about?

Dr. Laura Hoeksema:
Yeah. I think our hospice and palliative medicine teams really realize that it's a privilege to be invited into a patient's life during such a challenging time. And our goal is to make that time a little bit easier. Now, one of my mentors, Dr. Nadia Tremonti said death is sad, but it doesn't have to be scary. And so our hospice team really focuses on helping to take the fear out of death by really providing some education and guidance to patients and their families.

When we think about a baby being born, there's so much preparation that goes into it. There are classes to attend, books to read, friends who've had children who share their experiences and it's interesting to me that we don't prepare for death in the same way. And I think just as each of us are born, each of us will die. And thinking about how can we do the very best to support patients throughout that entire continuum of life and our hospice team exists to relieve suffering and to really help patients prepare for death and to help each patient live well until the very end of their life.

Annie Zaleski:
That's a really great way of looking at it, of looking at... It's your whole continuum of life. That's a really beautiful way of putting it.

Dr. Laura Hoeksema:
Yeah. Thank you.

Annie Zaleski:
Dr. Hoeksema, thank you so much for being here and answering these questions. I think this will help a lot of people as they're going through some tough times.

Dr. Laura Hoeksema:
Great. Thank you. I really appreciate the opportunity to be here today.

Annie Zaleski:
Both palliative and hospice care can provide solace and comfort during difficult periods of life. Working with a dedicated healthcare professional can help make these experiences easier to manage. If you'd like to find out more information about these programs, please visit www.clevelandclinic.org/hospice or www.clevelandclinic.org/palliativecare.

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