Hospice is a special kind of care that focuses on a person’s quality of life and dignity as they near the end of their life. The philosophy of hospice is that death is just the final stage of life. People should be able to live as fully and comfortably as possible for the time they have left, surrounded by their loved ones.
Hospice treats the person and symptoms of cancer, rather than treating the cancer itself. It does not try to postpone death or make it happen more quickly. A team of health care professionals work together to manage symptoms, distress, and spiritual issues. Hospice is also family-centered and includes the person with cancer and loved ones in making decisions and planning care.
When should hospice care start?
Hospice care can be started when a person’s cancer can no longer be controlled and they are expected to live no more than 6 months. Hospice can help make a person’s quality of life the best possible during their last few months, weeks, or days.
Studies show that many times hospice isn’t started as soon as it could be. This might be because:
- The doctor, patient, or family member thinks hospice means “giving up” or that there’s no hope.
- Some people with cancer don’t want to stop treatment, as they hope that it will still work.
- Some doctors or other cancer care team members don’t suggest hospice.
Suggesting that a person with cancer consider hospice doesn’t mean that the cancer care team is giving up. Bringing up hospice shows that they think the time has come to focus on managing symptoms and quality of life. Hospice can provide services that the cancer care team is not able to.
Don’t be afraid to ask your cancer care team if you or a loved one would like to know more about hospice. It is important for you to know all your options.
What is palliative care?
Palliative care is also called supportive care, symptom management, or comfort care. It can be given along with treatment to people who are not in hospice care, but also is an important part of hospice care. Palliative care does not treat the cancer itself. It’s used to prevent or treat symptoms and side effects as early as possible.
When palliative care is included in hospice, it can help manage discomfort, pain, nausea, and other side effects so that the person with cancer feels as good as possible and alert enough to enjoy the people around them.
Palliative care is given by a team that looks for and helps manage mental, physical, emotional, social, and spiritual issues that may come up. It tells the person with cancer and their caregivers the options and includes them in any decision making. It’s about making sure that all care needs are addressed.
How are hospice and palliative care different?
Hospice and palliative care both try to provide a better quality of life and relief from symptoms and side effects for people with a serious illness. Both have special care teams that address a person's physical, emotional, mental, social, and spiritual needs. Hospice care often includes palliative care, but they are not the same thing.
- Hospice care is given when a person’s cancer cannot be controlled by cancer treatment. Hospice focuses on managing symptoms and side effects. Hospice care is given to people during their last 6 months of life.
- Palliative care can be given at any time during a serious illness such as cancer. Palliative care can be provided while the person with cancer is receiving treatment to cure or control their cancer. In other words, it can be given at the same time as chemo, radiation, immunotherapy, or other treatments for cancer.
What the care teams do:
- A hospice team coordinates most of the care during a person’s last 6 months of life.
- A palliative care team works with the the person's cancer care team to helpmanage their symptoms and treatment side effects.
Home care and inpatient hospice care
Hospice care is most often given in the home. But for some people, being at home isn’t possible. So hospice care can also be given in a hospital, extended-care facility, or inpatient hospice.
Some people who would like to be at home need more intense care for a while. If that is the case, the home hospice team can arrange for inpatient care. The hospice team will stay involved in your care and you might be able to go back to home hospice when you and your caregiver are ready.
Spiritual care
Each person with cancer can have different spiritual needs and religious beliefs. The hospice team will take the time to understand your needs. Hospice teams often include a spiritual care provider, such as a chaplain.
The hospice team will make sure you get the support you need. This might mean helping you think about what death means to you, help you say good-bye to loved ones, or help with a certain religious ceremony or ritual. If you would like to speak with a religious leader from a certain religion, they can help arrange that for you as well.
Family meetings
A hospice nurse or social worker can set up family meetings to keep people informed about how you are doing and what to expect. These meetings can give everyone a chance to share feelings, talk about what’s going on and what’s needed, and learn about death and the process of dying.
These meetings can also give support to caregivers, family members, and other loved ones and help lower their stress. Between meetings, the hospice staff may also give updates if there are changes.
Coordination of care
The hospice team will manage all care for the person with cancer. They make sure that everyone who is giving care talks with each other and organizes their services. This might include the oncologist, hospice doctor, an inpatient facility, pharmacists, clergy, or funeral directors.
You and your caregivers should contact your hospice team if you’re having a problem. They have someone on hand any time of the day or night. Hospice care makes sure that you and your loved ones know that you are not alone and can get help at any time.
Respite care
Being a caregiver can be tiring and stressful. Many caregivers need a break to rest up and take care of themselves so they can continue to care for their loved one. Some hospices offer respite care. This lets caregivers and other loved ones step away from caregiving for a while.
Respite care can last as long as 5 days. During that time,the person with cancer is cared for either in the hospice facility or in beds that are set aside in nursing homes or hospitals. After the respite, the person with cancer will go back home with the caregiver.
Bereavement care
Bereavement is the time a person feels sadness after losing a loved one. The hospice team works with people who have lost a loved one to help them through the grieving process. A trained volunteer, clergy member, or counselor can support caregivers, family members and other loved ones through visits, phone calls, or other contact, as well as through support groups. The hospice team can refer family members, caregivers, and friends to other support if needed. Bereavement services are often offered for about a year after the person with cancer dies.
Questions to ask your doctor about hospice care
If you are told that your cancer can no longer be controlled, you may want to ask your doctor or cancer care team about hospice care. You should know the benefits of hospice care, and any restrictions for treatment or other services. Here are some questions to consider asking:
- Do you think it's time to think about hospice? Why or why not?
- What will hospice offer me that you cannot?
- What will hospice not be able to offer me?
- Will I still be able to make decisions about my care?
- Where do you suggest I get hospice care?
- Do you think I will need special equipment?
- Will you still be involved in my care if I decide to get hospice services?
- What's the next step?
- Can someone help me contact hospices?
- Are there certain hospice providers you suggest?
- Is there a cost difference in hospice providers?
- What if I sign up for hospice then change my mind?
- What should I tell my family?
- What should I do if I have an emergency while I'm getting hospice care?
