Caregiver’s Guide Through Hospice

Being a caregiver for someone who is terminally ill can at times be stressful and exhausting, but there is help.

Allina Health Hospice and Palliative Care physician and medical director, Dr. Joe Amberg joins us to talk about hospice care and how it can provide comfort and support to your loved one, as well as their family and friends.

Caregiver’s Guide Through Hospice
Featured Speaker:
Joseph (Joe) Amberg, MD - Hospice and Palliative Care
Dr. Joseph (Joe) Amberg is a board-certified physician and medical director of Allina Health Palliative Care, where he leads the palliative care teams at all Allina Health hospitals and provides medical care, including home visits.

Learn more about Dr. Joseph (Joe) Amberg
Caregiver’s Guide Through Hospice

Melanie Cole (Host):  Being a caregiver for someone who is terminally ill can, at times, be stressful and exhausting but there is help. My guest today is Allina Health Hospice and Palliative Care physician and medical director, Dr. Joe Amberg. Welcome to the show, Dr. Amberg. What is hospice care and does it mean that this person is now terminally ill once they have entered hospice care?

Dr. Joe Amberg (Guest):  Hospice care is a special kind of medical care provided by nurses, doctors, chaplains, social workers, volunteers – a whole team of people--specially designed for people who do have terminal illness. It provides the necessary care for the person living with that illness and their family as they deal with this difficult time. 

Melanie:  People get hospice and palliative care confused all the time. Please explain the difference between those two.  

Dr. Amberg:  The important difference is that palliative care is the same kind of attention to comfort care and personal care and social needs but it can be provided for people who are not terminally ill. It can be provided for anyone with a chronic illness who needs extra attention to comfort.

Melanie:  So, palliative care involves medication and, as you say comfort, sort of all the same things, it’s just that someone can be in palliative care for a long time. Correct?

Dr. Amberg:  That’s right. We like for people to get palliative care early in the course of any chronic illness. It gives them the power to direct their care according to what’s important to them. We have staff who are specially trained in communication, listening, and getting to know the people who are living with this illness.

Melanie:  So, putting somebody into hospice care, calling in docs such as yourself, is a big decision and not easily made. It’s very emotional. What is your advice on starting that conversation with the person that you love and getting them involved in this kind of care?

Dr. Amberg:  It’s a very big decision. It’s a tough time for people and family who are living with a possibly terminal illness. So many people feel like choosing hospice is giving up because they will not be receiving any more treatment to prolong their life. In fact, when people choose hospice care they will continue to live their life as they naturally would. They may even live longer and better than with usual care. The important thing is to ask your doctor, or any other healthcare provider that you know, questions about hospice so they can direct you to the right people and be sure to talk to your family. It is very important that once you have made this difficult decision that everyone in the family supports you, too.

Melanie:  So, what are some things that you want the family and their loved one to think about before going into hospice? How do they think about what their goals are for care? As you said, people think that it means giving up but it really doesn’t. So, what do you want them to think about as the goal of care? Whether it’s for comfort, feeding – what’s involved?

Dr. Amberg:  That’s right. I want everyone in the family to know what is important to the person living with this illness. It is very normal at this time in life for people to want to spend time with their loved ones doing things that are meaningful to them. The other important thing to understand from a technical point of view is that the person would probably not want to return to the hospital, have tests or procedures any more. That can be a difficult transition when people living with illness become so accustomed to that as part of their routine healthcare. In fact, they get a lot of their emotional support from their healthcare team in that way. So, it feels like giving something up. What hospice provides instead is a lot of attention directed to the less technical aspect of care.

Melanie:  What services are involved in hospice care?  

Dr. Amberg:  The most important aspect of the hospice care is the hospice nurse. This is a healthcare program where we really elevate the nurse to a responsible role to get to know the person and assess the medical needs. There is a large team supporting the nurse case manager: a physician, like myself, who is medical director for the hospice team, a social worker, a chaplain – we always inquire and support the spiritual needs of our patients. We have volunteers. They are a core participant in our hospice care team. Then, we have a lot of integrative therapy specialists: music therapy, massage therapy. Some of our teams even provide pet therapy. We all work together. We meet every week to talk about the people we are taking care of, so it is a coordinated effort. People who see us come to their home to visit and provide this care sense that they are part of a team.

Melanie:  Do you still be involved with your primary care provider when you’ve entered a hospice program?

Dr. Amberg:  Yes, absolutely. It is very important to know that the hospice team is not taking away any of the contact that you have with your primary care provider. For most of my career, I was a primary care internal medicine doctor and it was important to me to maintain contact with my patients until the very end of life. I did not want to lose that because they were getting hospice. So, it is important to know that they stay involved. They still approve all of the treatment that we recommend and stay involved throughout the course of time in hospice.

Melanie:  So, let’s speak just a little bit about the caregivers themselves because this is such a difficult thing but hospice provides that extra support when you’re caring for someone who is terminally ill. Does the caregiver then get a bit of a break? Do they get pushed to the side? What happens to the caregiver that has been caring for this person once hospice gets involved?

Dr. Amberg:  The caregiver has a key role in hospice care. I’m talking about a spouse or a daughter, or a sibling, or even a close friend who provides this care at home. Hospice does not provide 24 hours of care. We are not there round the clock to meet the day-to-day care needs for people who are living with a terminal illness so we rely on family members or others to do the basic care of keeping a person clean and fed and comfortable and receiving their medication on time. There are times where that can be overwhelming and the hospice team can provide care temporarily in a facility that is called “respite care”. That is a well defined benefit of hospice care and this gives families a break so that they can get their energy back until the person returns home. Sometimes families can’t maintain this care at home; it can be too exhausting and that is when our social worker helps to arrange for care in another setting.

Melanie:  Some common misconceptions and myths about hospice. I’d like to cover one, Dr. Amberg. Hospice care is all about how you die. Please explain how that is really a myth.

Dr. Amberg:  It is. Hospice care is all about how you live. We recognize that people coming to hospice have a serious illness that may end their life. The care that we provide helps to make that life as meaningful and as comfortable as possible during that time. None of the treatment that we provide either hastens death or changes the natural outcome. We really like focusing on the positive aspects of living well. That is why the success we have had with hospice has led to the specialty in the field of palliative care because providing what seems like a simple attention to social needs and comfort really helps people live better. We should be doing this not just at the end of life but throughout the person’s life.

Melanie: I agree completely. Give your best tips to the caregivers at this emotionally difficult time. What tips can you give them to make it a little bit more bearable?

Dr. Amberg:  One is to be willing to ask for help. So many people that we know are fiercely independent and value their ability to take care of themselves and it is a loss when they can’t do that. The caregivers, too, can become overwhelmed in that role. So, be willing to ask for help. Take advantage of this time to really open your heart and say things that are important to the people that you love. I am from Minnesota and we are famous here for hiding our feelings and not speaking openly. So, we encourage you to say, “I love you,” share memories, say all the things that are important at this time of life. It can make this whole experience very positive.

Melanie: In just the last minute, Dr. Amberg, how does somebody get that involved in hospice? What is the first step they should take if they feel like their loved one may be ready for hospice care?

Dr. Amberg:  You need to talk to your healthcare provider and they can help connect you to a hospice program in your community. So, that is the first step. You need to talk to a nurse, a care manager or a healthcare provider like a physician. When you feel you need hospice care, it is important to talk to your healthcare provider–that can be a physician, or a nurse, or a case manager that you are working with--and if they aren’t able to connect you directly with a hospice program, you can call Allina Hospice directly at 651-635-9173 or check the internet at and you can make a quick connection and we will help to get you the treatment that you need.

Melanie:  Hospice is such a wonderful program for someone that you love. You can call Allina Health Hospice at 651-635-9173 and for more information you can go to That's You’re listening to The WELLcast with Allina Health. This is Melanie Cole. Thanks so much for listening.