(slow paced music) (waves susurrating) - [Speaker] What is hospice?

The best way for me to explain it would be TLC for someone at the end of life.

It's a privilege to be with people in this life event.

You get to support someone in a very tender time and you get to support their families afterwards.

- [Speaker 2] Part of being human, part of the human condition is fear of death.

And what hospice does is help people navigate that a little more.

- [Speaker 3] There are things worse than death, and that's a life that is not fulfilled, that is lonely, that is not supported, that has not accomplished what a person feels they need to accomplish.

And when we're afraid to deal with end of life, we don't do those things.

- [Speaker 2] I think the work that hospice can do to help people feel more comfortable and to prepare them for what's going to happen, not only the patient for what's going to happen their physical death, but what their family can be prepared for and really begin to focus on what's important.

- [Speaker 3] It is our belief that all emotions stem from two places, either from love or from fear.

And at end of life, we often see fear winning and it's our job to change that, that hospice is truly about love and about honoring and about quality.

And so we transition, we reduce that fear and allow love to grow.

- My name is Marcie Hillary, and I'm the Senior Vice President for Community Relations at Hospice of Michigan and Arbor Hospice.

I've been doing this work for over 24 years, and for me, it's extremely personal.

When I was just a little girl, my grandfather was diagnosed with a brain tumor at 56.

Our entire family surrounded him to help take care of him in those final months.

In fact, the summer before he passed away, we moved in with him to help my grandmother out.

As a result, my mother ended up working for the organization, my uncles and brother volunteered and for me, this became a calling to work for this, not-for-profit hospice organization.

I do this work every day because I want every other person living with a terminal illness to get the care that they need and deserve at end of life.

And so if this is a situation that you're facing, please consider using hospice care, it'll be the best decision you make for you and your family.

- The Hospice Movement that we know today had its genesis in a woman who started actually as a social worker in England Dame Cicely Saunders.

She was a social worker and recognized in her work that she could do more and wanted to learn more, so she went back to school and became a nurse.

She worked as a nurse and again realized, there's more I wanna do, there's an additional step.

So she went back to medical school and became a physician.

And through her work, and as she studied patients, she studied the relief or lack thereof of pain, as people came to the end of life, she realized that there's a better way to do this.

In 1967, she founded St Christopher's Hospice in London, England, it's the birthplace of hospice.

She had a great vision.

One of the great things she did was not sit there and create a wonderful medical benefit just in England.

She taught others, she took it national, international if you will.

And one of the women that really caught the vision for this was Florence Wald.

She was a nurse in Connecticut and she learned about hospice, she visited St Christopher's and in 1974, started the first hospice in the United States.

What you saw in her and what she reflected from Dame was a real way in which we started to take care from a hospital in a physician-based disease focused model, to care that was focused on the patient and the caregivers, the family, the community.

It wasn't focused on a disease process, It was focused on let's relieve symptoms and let's treat people holistically, let's know that grief's coming, and let's do some great work and let's bring volunteers into this.

And let's really kind of fight the system a little bit and not go down a pure medical model, but let's create a community-based model.

Let's go to the bedside in people's homes, that wasn't done in the '60s and the '70s.

That's one of the things that hospice changed.

Fast forward to 1994, these 10 hospices came together.

They formed Hospice of Michigan, realizing that we're stronger when we come together and we work together, we can share resources, share best practices, learn from each other.

We were the first large statewide hospice, certainly in Michigan and really in the nation.

NorthStar Care Community was founded about five years ago.

And the concept was that we have multiple brands, we have multiple ways in which we deliver care.

And as we understood the expertise that we bring to the table that we've learned through innovation, through working over a large geography, we recognize that we've got a role to play nationally.

And as we begin that work, you can't go national with the name Hospice of Michigan, it doesn't have perhaps the relevance or it may not be understood.

So NorthStar Care Community for us is a way to step back and have a bigger name that speaks to the work that we see ourselves doing nationally.

It's real leadership, it's like a North Star and for us, it's a big deal, it's a big mission-driven element.

NorthStar Care Community is by choice and not-for-profit organization.

It means that at the end of the day, if there is money left over that money is reinvested.

It's reinvested in staff, it's reinvested in how we deliver care, it's reinvested in our community, and for us, that's really important.

Research continues to show that a not-for-profit hospice provides more service and provides better service for patients and for their families.

There are a lot of not-for-profit hospices that we work with, that we partner with in the United States, and there are two in particular I'd like to mention.

One is the Hospice of Santa Cruz County, California.

And as we've partnered with them, we've realized that the geography from Michigan to California, isn't relevant.

There's things that we can share, there's ways we can support each other, there's best practices we can learn from it.

It's been an enriching journey for us.

Another not-for-profit is Hospice Savannah and another organization that's been there for 40 plus years.

Great mission serves a beautiful community and been a great strong partner for us.

We're learning a lot from each other, it's really been a fun journey with both of them.

- When you look at our organizational chart, at the top of our org chart, are patients and families, that's at the top and then comes our board of directors and then comes our staff.

And I think that's different than a for-profit hospice, where at the top of a for-profit hospice, it's the folks who are going to reap the benefits financially from the services that they're doing.

So to us, it's about community.

- A for-profit hospice is a business.

It is reimbursed by Medicare, it is set up as a business, there are stakeholders and investors.

Whereas a non-profit hospice is governed by a community board and very vested in the community because the board keeps that governance and holds that hospice accountable to the community needs and benefits.

- In the world of non-profit hospices, philanthropic support is so vital because non-profit hospices go above and beyond.

They get that we're more than symptom management, that we're more than the physician, that is the collective soul of not only the patient, but the family.

We have the story keeping, massage, music, those are not funded through the traditional Medicare, or insurance reimbursements.

And so it takes philanthropic support to provide those services.

We're very lucky that our community sees how we take care of our community and have been very generous in supporting the mission we have.

- Being in a fairly small town community, our not-for-profit hospice, we're caring for our neighbors, we're caring for our friends, sometimes we're caring for our own families.

The beauty of a not-for-profit hospice is that we wanna make sure that we're able to provide the exceptional care that our community deserves.

So along with the hospice program, which all hospices provide, we look at how we can make sure that all the patients and families needs are met at the end of life.

And that includes a really extensive grief support program.

We look at programs like pet therapies and music therapies, all these things that people can choose, that can help them ready themselves for the end of life, that can help prepare their families for this as well.

(door knocking) - One of the greatest misunderstandings about hospice is that it's something you get involved with in just the very last days of life.

When in fact people have the best experiences when they've been on hospice for quite some time.

People choose to stop treatment and at that point, they really should be looking at a hospice.

- Hospice is extremely important for end of life care.

And if people knew more about it and utilized it more, it would change how they navigate end of life.

They would have comfort care and be at home with loved ones and spending that time with doing what they wanna do versus having to go to an appointment or having to have treatment.

- They'll often say, "But we're not ready for hospice."

And that's where I really think the shining moment comes in, that very few people are ready for hospice.

That's not the idea, the idea is that your bodies at a particular state in its illness, which is life-limiting, and you're not seeking treatment to keep yourself alive longer, or it's not available to you.

That's all that it takes to start hospice.

When did the word ready come into the consents?

That's not what Medicare told us.

Medicare said, you meet those two criteria and you're over 18, we're happy to serve you.

- I think many people are afraid of dying because it's a fear of the unknown.

I think what hospice does for the patient and the family is give them comfort.

They remove an element of fear of the illness, of the death, they are always available to give you answers to your questions like what's happening to the patient?

Describing something that is very frightening for the caregiver to see, but the nurse says no it's normal.

It makes the caregiver more comfortable with the patient and therefore puts the patient at ease and eliminates some suffering that is caused from stress.

- We want people to understand that one would never have a child without support, without a team, without a doula or physicians, a pediatrician, an entire process, but yet when it comes to end of life, we're so afraid of it that we just go without any support.

And that's where hospice comes in.

A hospice provides that support, that team and reduces the fear and creates the passion and gives people quality of life at end of life.

- Well, I have often said that the nursing staff, the social work staff, the administrative staff, and they're all angels on earth.

Without them, there is no program and their dedication to the families, to the work they do, I just can't imagine what it would be like without them.

They make the program.

- All this group comes together to support the patient and family.

And that group is always in communication.

So after a visit, the nurse will share information with the rest of the team.

So when the hospice aid comes in, they know exactly what's going on with the patient and family, they don't have to ask the same question.

Nobody likes being asked the same question again and again about their care.

And so that the whole team knows, so when they go in, they're picking up just right where the last person left off.

It's really a beautiful way to look at the whole person and to look at the patient and family as a whole unit of care.

When I think of our team, the people who do this work, they do this work because they have a calling.

It feeds them in a way that they're able to continue to support the patients and families.

It's not something that people go into lightly.

- This is not a normal job, even for most nurses, we get nursing students that rotate through here, and many times they just say there is no way they could ever do that after riding with us for a day.

And I think it's because we get so close to the patients and then they do die and we all know they're gonna die.

It's sad, but it's also very rewarding, and it's a very intimate time in people's lives, and they share things and stories and family events, we're part of all kinds of things with them.

And it's just an honor and a privilege to be able to be with people at that time in their life.

- I'm not sure I would know the why's, I just do it.

I just care and I just love helping someone or anyone who needs help.

And whatever the help comes in, fit may be the conversation.

It may be me being your physical part or me just relaying some information, me just totally here for someone else besides me.

- It's a real privilege to move from the hospital where you're kind of doing things to people, to being in their homes where you're doing for them.

And it's all about comfort, nothing counts, except comfort.

- It comes naturally, it really does.

And it's so rewarding when they allow us and they open the door for us.

It can be a little bit intimidating for them and they could say, "Well, an aid, I don't really want an aid."

But once we walked in and they know they see what we do, in a very compassionate way, they do really open up.

- I love the work.

If I can make someone who is at end of life smile, or laugh or tell a joke that makes their day, then I think that's the best medicine.

- The reason I do hospice work is that I feel this is a very important way for me to serve my community at a very special time in someone's life.

- Can anyone do hospice?

Technically yeah, but it's those that are called, it's those that really step up and say, this is the mission, that's gonna get me outta bed every morning.

And we've got hundreds of staff, there's thousands in the U.S., and they do a beautiful job each and every day.

- This is the last job I'll ever have, and it's a great way to end my career.

(waves susurrating) (cool piano music) - Hospice is such a huge help.

I didn't want to go down that way, 'cause I still had the old conception of what hospice was that you went into hospice to die and it was the end of life.

So it was a huge decision and a huge struggle with those old fears, but once we made the decision together to do this, it's been a lifesaver.

I couldn't do it without 'em, they're huge support for me and for Roberta.

- Dr. Roberta Smith was a self-referral for us.

She knew about hospice and wanted the support for herself and her partner Judith, Judith felt very alone providing all the care for Roberta and Roberta has always been the one taking care of most of the medical things and now the roles are reversed.

- Judy and I have been together for over 20 years and we were very active.

We had jet skis and we went places and we took trips.

It's been really tough because poor Judith was having to practically drag me around because I just couldn't get around very well.

So when I finally did get diagnosed, we got me on meds, which helped enormously.

It's made life a lot easier, particularly for her, 'cause it takes some of the burden off, of all the care that she has to give.

- She gets the help, but then I get the emotional help.

I get people to talk to, I have people calling me all the time, I have social workers calling me all the time, making sure I'm okay because it's a struggle.

The caregiver, it's not an easy road and I didn't wanna accept some things.

It was harder, it was like, I didn't wanna see it, I didn't want it happening.

You wanna fight it to the bitter end, but once you give into and accept help, it's been just a lifesaver.

They're so supportive emotionally and physically with her, with the bathing and helping her dress.

- You've got a nurse, a social worker, a chaplain, I have my aid who comes and helps me bathe.

So you've got a lot of people that you can ask questions to, that give you advice that notice things.

And so it's a source of ideas as well as care.

I don't think many people understand than what hospice does.

They don't think they have any awareness of it being a source of help and planning how you wanna spend the rest of your life.

- It's not the golden years, I don't know who said it was the golden years, but it's not the golden years.

They feel rusty, tarnished, everything seems to fall apart at one time.

If it's not her, it's me or the house.

Watching her deteriorate is very, very hard for him being this strong doctor and smart and always on the go to struggling and struggling each day.

It's difficult, but it's inevitable, and you just have to do one day at a time and take one day at a time and try to stay in the moment and appreciate everything that happens, one moment by one moment and hold onto the good.

(slow paced music) - For me, the interesting part was being able to merge my civilian practice, which was geriatrics first and then palliative care and hospice with my military life where I had 30 years total service, which came in great dealing with veterans.

World War II, Korea, even Vietnam era veterans, and caring for them at the end of their lives, understanding the special challenges that they have.

So for me, it's been a very nice personal journey of having my two passions merge in my professional life.

Quite often, I find myself hearing a story from a veteran.

And when I have that experience, it feels like I'm in a sacred space, not in a religious way, but in a spiritual way of human beings who have been through some unusual experiences connecting and being able to help somebody who really needs that connection as their time is running out.

- Today, one in five hospice patients are veterans.

In 2016, Paul and George Gordon decided that what they could do was form the West Michigan Alliance for Veterans to make sure veterans who have sacrificed so much are aware of and have the resources they need to be treated with respect and dignity from the day they return from service until the end of their life.

It's not only the veterans that you're dealing with, but hospice also deals with the families.

- I had one experience with a veteran who was really struggling, he didn't want care, he kinda turned his family away, and so I went out to visit him.

He shared with me a story that one of his fellow waist gunners got shot up in one of their engagements and the guy eventually died in his arms.

And this happened to him at 19 years old.

His daughter is kind of around the corner in the kitchen as we're having this conversation, and she's just weeping because she said, "My dad never told us any of that stuff, we had no idea.

Yet here you come in as a stranger, he told you more in 15 minutes than he's told us in the last 50 years."

We are so happy to have veterans who now go through our volunteer training program and do that vet to vet service for our hospice patients.

- Mr. Burgess was in the Navy, it's really something that you don't get every day, yes.

And so when that happens, when he talks about it, it's just, it stays with you, it stays with me, it's remarkable.

- Bob had gone in the Navy.

He'd actually been recruited and signed up in high school.

He was very lucky to be stationed at Hawaii.

One of their missions was to go to all the small islands and get medicines to them.

It was called the destroyer escort right now we're living in Santa Cruz, but we thought this would be a great place to be because we both love the ocean.

And so we have stayed and have marvelous help, like the care that we're getting from hospice.

Their level of expertise is amazing.

They step right in and get the job done and not only get the job done, they support me, they wanna know if I'm okay, they wanna know how his day goes.

They come in, they're part of the family.

You saw some of us together today, you don't do that with someone you don't trust completely.

- [Speaker] The We Honor Veterans Program provides professional training to hospice workers so they can in turn, provide care, understanding for veterans and veterans families at the end of their life.

- [Speaker 2] Hospices around the country who participate in the We Honor Vets have a format for giving a small token and it is put together as a ceremony.

We invite the family and friend, anybody that wants to come and share this, just as a public recognition of their service.

The symbolism of it, the idea that that veteran's service, which may have occurred five decades ago is still something that people value.

It's very rich in symbolism and it's very meaningful for the family.

So the pinning ceremony is a public face of a large program, but it's very special, and it's always a great thing to be part of those.

- In my mind, I was good for maybe another three weeks and I was outta here.

Once I got into hospice and lo and behold, I started to get better.

I got better to the point, where I'm almost feeling like a human being again.

I've been afraid I was gonna flunk out of hospice, but happily I haven't because it's just a wonderful operation.

They take all the trauma out of it, and their purpose is to make your life comfortable, and it's just been wonderful for me.

- Maybe magic seems like the wrong word to use, but there's a magic to that, in veterans caring for other veterans.

It's really hard for civilians to understand why that should be such a thing, but it really is.

I think it's exclusive to veterans and it it's what helps me remain passionate about this work even many years later.

- [Speaker] I don't think there's many of us that as parents have everything planned as if we're gonna lose a child.

We might make plans for when we are gonna retire or for our own care someday down the road.

We don't expect that it's gonna come so soon or that it's gonna happen to a child.

- It's not part of the natural order to think about children at the end of life.

So that has meant huge obstacles in developing and programming children's end of life care and children's hospice for many, many years.

Despite incredible advances in the successful treatment of children's cancer and higher and higher cure rates for children's cancer, the unfortunate reality is that one out of every five children that are newly diagnosed will not survive.

How do we deliver the same high level of care, the same compassion, the same innovation to children at the end of life, as we do, when we are trying to save their life?

Children are little adults, one size does not fit all.

That means that when we develop the expertise, when we develop the staff, the equipment, the techniques, the technology to support children through an end of life transition, it has to be uniquely focused for children.

Our staff has to be trained, has to be experienced with the insights that come along with a pediatric caregiver.

- Concurrent care serves children from the age of birth up to 21 to continue to seek a life sustaining and curative treatments while simultaneously receiving comfort care based in their home.

What that means for Patrick is his family is that we can be here to provide that 24 symptom management and ideally keep him out of the ER and long hospital admissions.

And we can offer him the full range of hospice services that are available to the adult population.

We can be here any given moment to support them through those difficult moments.

- I love my grandson a lot, he's my heart, he's my heart.

Hospice has been helping me a lot with Patrick, every week the nurse come and check Patrick, how he's doing, if I need some medication, anything that I need, they do it.

I really thanks hospice for all the help that have given me with Patrick.

- It is not a child in isolation, it is his entire family, it's an entire neighborhood, it's an entire community that cares about that child, that embraces that child.

And the same is true for a child and family going through a difficult journey at end of life.

It is not that child, it is the child's extended family, their church, their school, their neighborhood, their community, coming together to partner fortunately with the hospice caregivers to help that child and family during that difficult time.

- When Haley was about 19 years old, she got super sick and ended up in the hospital, and we kind of knew that this was towards the end.

The hospital told us that we should consider the Anchors Program and I was very apprehensive 'cause I didn't wanna go to that point of going to a hospice program 'cause I didn't think she was there.

(slow paced music) - I think what our program offers for a parent who faces the reality of a child with a terminal diagnosis, that we can provide the medical services, the social services, the compassionate services for the family and the child and siblings while also allowing the family to never give up hope.

- You think of hospice, you think at the end of life and just the last moments, but this program is completely different.

It's for the whole family, it taught us so much about what to look for and what happens as well as the emotional and the spiritual support.

You feel like a family, the aid, the counselor, the nurse, the doctor, they were all there for us all the time.

- I would just hope that with the compassionate care and relief and help with anxiety producing circumstances, that the family can enjoy more time rather than be stressed during that time, so that the time they do have is quality time.

- What they did provide was emotional stability and a peaceful place for her to go in our home.

That's where we wanted, we wanted her to be with us when she went and having everyone that loved her around her the entire time and in her own home, in her own bed and made it absolutely wonderful to have her with us the whole time and for it to be peaceful.

If it wasn't for the Anchors Program, I don't think we would've, I know I wouldn't have been able to handle it, as well as we were able to handle it or as well as any parent could, when you're losing a child.

- Come on, say it again.

- [Speaker 3] Haley.

- Say hi.

- Hi.

- [Speaker 3] Yay, good job, Haley.

- My baby.

- [Speaker 3] (laughs) You said hi to mommy, now she's hugging you.

You like mom hugs, don't you?

You make mommy so proud.

(Nisha sobbing) We're proud of you kiddo.

Good job, Hay, good job baby girl.

(Nisha sobbing) Yeah, good job.

Yeah, (laughs) good job babe.

- [Nisha] Hi princess.

- [Speaker 3] Children, I think naturally are wired, even more so than adults to see that every precious moment, that specialness in every experience, in every interaction, in every activity that they take part in with full engagement and with full joy and with such an immersion that it kind of inspires all of us as caregivers to know that it's not the quantity of time, it truly is the quality of time that we see play out with those children and families.

- I was very ill prepared and hospice helped with the planning.

They helped make Liam comfortable so that when his time came, Liam was at home, he was surrounded by family.

We were watching videos of when he was young, there was laughter in the room we sang and in the midst of singing a song that was one of his favorites, I'd sung it to him many, many times throughout his life, I whispered to Liam, it's okay to let go.

And he just drifted off and all the family was in the room with us.

He was going through so much and it's hard to watch that as a mom.

He knew better, he knew that I would have family there, he knew when the right time was and it was so peaceful.

I hate to say that it was beautiful, but it was beautiful.

It's heartbreaking to think that there are children out there, that there are still children out there, that are needing end of life care.

But how grateful we are for all that they provide and continue to provide our family.

- From the time we are born, we as human beings face a wide range of emotions and grief is one of them.

The origin of the word grief is something that is a burden, that is heavy, that is sorrowful.

And if we are really honest with ourselves who wants this burden?

But as they often say, grief is the price we pay for love, it is the price we pay for being connected to someone or something that we no longer have.

- After Haley had passed, Pediatric Hospice Program was still a big part of our life.

They offered social work services and grief counseling to the whole family, and it actually benefited all of us.

- When you talk about grief support and hospice care, it starts when they really come onto the program, we are there to assess how are they doing with their grief?

Because grief doesn't start at the moment of death, grief really starts when you receive the diagnosis, that may not be very promising.

That's when we start looking at how do we support this family through this grief journey?

Whether it is our social workers or our spiritual care or our grief support, we are there to provide that emotional guidance and support to help navigate the anger, the guilt, the depression, all of that web of emotions that the patient and family both may be experiencing.

- Nobody was taught how to grief, nobody was taught how to take care of their loved one, hospice is there to help you.

Even after the loved one is gone, they are still there to make sure that the family is okay.

- You have to be willing to now journey with that family.

And what does that look like?

There are those who need a weekly visit, a monthly visit and someone to talk to, they wanna come and be with other people, so I want a support group.

We meet people where they are, what are your needs and how we can support you through what can be a difficult time.

- We were all showing grief in different ways.

Instead of all of us dealing with it separately, we kind of joined together as a family and we're able to grief together and still to this day, it's been over a year and a half, if I need to talk to someone, I can still call.

- An important part of our grief support program is the support that we provide to children.

When a child loses somebody important to them, they often don't have the language, the words to be able to express that, and so we have a program that brings in all different kinds of modalities, of play therapy, of sand tray therapy, of drawing, of playing, and yet within that, there are support systems to help the child grieve.

- Hospice gave each one of my daughters a teddy bear that had my daughter's heartbeat on it.

And so we can still hear her heartbeat whenever we want.

My daughters keep it with them always.

It's a great thing.

(slow paced music) - One of the most important roles that we have is volunteers, 'cause what we do is we provide whatever the patient and family wants at end of life, from the volunteer perspective.

We provide companionship, we talk to patients, we provide music, we read to them, we can give the caregiver some relief and they can leave the home so that our volunteers can be with the patient and making sure they're safe.

- My late husband, Bill, became ill and I had hospice care for him and it was so wonderful and so helpful.

And our life was so much easier because of it that I ended up with Hospice of Louisville for four years before moving to Alpina and the rest is history.

And it's what I love and what I do, and hopefully I'll be able to stay healthy enough to continue.

- Volunteers have diverse backgrounds, but what we do find they have in common is that they've had a hospice experience with a loved one.

So they're familiar with hospice, they want to give back and they wanna enhance their lives too, by being able to provide the service for the patients and families.

- The reason I am a volunteer for hospice is I enjoy people and I care about people, no matter what situation they're in, but usually when people are at the end of their life, they really need somebody sometimes other than family to talk to, so I'm that person.

- My desire to become a volunteer for hospice was influenced by making sure it was a non-profit hospice, because I knew that they were gonna be there for me from the beginning to the end, regardless of cost, regardless of how much help was needed, and they were gonna be there to the bitter end.

And for me, that's just critical.

- Some of the unique aspects of a nonprofit hospice are what we offer that are not reimbursed services.

So these are funded through donations, purely donations, and we keep them going because they, in our opinion, constitute some of the most important care that we offer patients.

- One of our unique examples of holistic services would be music therapy.

I really believe in music therapy specifically with hospice because personally and professionally, I believe that it's a beautiful act to bring beauty where there is suffering and bringing music to people on a more intimate level and really personalizing the musical selection, just makes it more meaningful for patients.

And my goal is to really evoke deep memories.

You know, when we listen to music or even sing music, it lights up all parts of our brain.

So music is a beautiful way for family members to be engaged and just share with their loved ones.

And no matter what state we are in, we can always receive music.

(slow paced guitar music) Today, I'll be singing for Eva, who is actually a Holocaust survivor and her daughter Silvia.

- My mom has had a very colorful life.

She did a lot of acting over the years.

When she was around 75, she wrote a one woman play about her experiences, being a child growing up in Hitler, Germany.

And mom has performed that play until she was 95 years old.

- This day in August, 1936 and I'm 13 years old.

My mother and I, have just returned from the cemetery.

- [Anya] Can you hear me Eva?

- Mom, can you hear Anya?

Can you hear her talking?

Yeah, we're gonna sing, get ready, are you ready?

- I have a couple songs in mind, Eva, "Eight of Us" or "Somewhere Over the Rainbow".

What do you think Silvia?

- The one that I've seen.

- The "Eight of Us".

- Okay mom, here we go, we get to sing.

Mom lived independently in Seattle, in her very own place until she was 97 years old.

And finally it was time for her to come be near me here in Santa Cruz.

♪ Eight of us ♪ ♪ Every morning ♪ And I was so incredibly grateful to hospice.

If it had not been for hospice, we would not have made it through that very difficult time.

I knew that mom was being watched over and cared for, it's been a lifeline, an absolute lifeline.

And I don't think I can put into words this sense of relief and happiness that it gives me to know that mom is safe and all is well.

Hospice is the most amazing program, there could possibly be to support people as they move on in their lives.

♪ Eight of us ♪ - Everybody always ask me, how can you do that?

These people are dying.

Well, do you care about dying people?

Yes I do, and it's listening.

They just want you to be in their moment, you're having a conversation with somebody who really enjoys you being there.

You just feel good about yourself, that I've done something good today, I didn't want a paycheck, I don't need a paycheck, I just do it because I care.

(slow paced music) - So true benefit of hospice care is being able to forego treatment for comfort and spending time with family and finding a spiritual connection with their end of life.

And they actually end up living longer than expected on service.

- I've seen people that are on hospice, they tend to lead a longer life.

I mean, people are living longer, even with illnesses and diseases, you just never know what the outcome is going to be.

- Everything about being a human is about where do we wanna spend most of our energy?

And when young children and young families are spending all of their energy in systems that are important, but don't provide for as much relaxation, comfort, routine, sight, smells being in their own beds, children may not have the opportunity to live as longer as robustly, but with a concurrent care team, they can have both.

And oftentimes we can keep them alive much longer, not only that, but we're all made to live.

And so their young systems desperately wanna be alive with their families.

And so we give them more of that opportunity because they get treatment and they get comfort at the same time.

Our goal is that every child and family has the opportunity to close their chart and continue living without concurrent care.

(slow paced music) - One of the things that often makes me personally sad is when I hear a family say, "If I had known how much you were going to help us, we would've called sooner."

And so how do we as a hospice organization, help get the message out there that hospice care can be of support for many months at the end of life?

We also see that the longer somebody is on service, the more satisfied the family is with the care that was provided.

When somebody's only on our care for just a few days, we're really trying to make them comfortable and make that end of life experience as comfortable as possible.

But when somebody's on care for months, we can help prepare, not only the patient who's dying, but the family for what's going to happen.

And that just can't happen in the last couple of days.

And so our work as an organization is to help people understand that hospice care is available for many months at the end of life.

- The goal of the team, the multidisciplinary team is to help you adjust and integrate and maybe get to a place where you feel accepting that this is the stage of life you're in.

But that's not a prerequisite to start the care, the care is because your body's at this stage.

If it's about being ready, if it's about the H word, we can remove that and just stick with the fundamentals, life stage based on illness and access to treatment.

And I think that really helps people reformulate in a way that let the experts come in and help the way we need.

We're not expecting Zen here, we're expecting complicated families who don't have the resources or the time, who've never experienced dying, and that's what makes our society in some ways very difficult to live in, is we're not talking about it until we're in it.

You've likely, never thought about some of these important topics, and so of course it's scary.

The scariness is because it's unknown and it's our job with the social worker and the spiritual care counselor and the music therapy and the volunteers, to day-by-day rapport building, by rapport building opportunity, get to know you and help you really integrate a really big, profound moment and many people get there.

I often tell them this Langston Hughes poem, where he says, "Birthing is hard and dying is mean.

So get yourself a little loving in between."

And I think that's what hospice is, it's that loving in between, and the sooner, the better.

- [Speaker] Hospice is a healthcare benefit.

It's provided by Medicare, Medicaid and private insurances.

But when it comes to not-for-profit hospices, you may also access care even if you don't have insurance.

What's included in the hospice benefit is the entire clinical team.

It also includes all the medications related to the illness and all equipment related as well, things like hospital beds and supplies.

You can access hospice care by having a physician refer you or by picking up the phone yourself and calling a hospice at any time, and a nurse will come out to do an assessment.

(slow paced music) Hospice care is a gift, and at the end of the day, on behalf of all the hospice providers across this country, we want to be there for you and your loved ones to make sure to bring dignity and respect and honor at the end of life.