Lauren Starr, PhD, MBE, RN, postdoctoral fellow in palliative and end-of-life care, New Courtland Center for Transitions and Health, University of Pennsylvania School of Nursing, Philadelphia.
Hospice is a type of health care that moves away from curative treatments and instead focuses on relieving pain and symptoms, reducing suffering, and improving quality of life for people who are within six months of the end of their lives.
Hospice means shifting from the goal of a longer life through treatments to creating the best quality of life for the days one has left. It enables patients and families to prioritize symptom management over the pursuit of aggressive, often uncomfortable treatments that may or may not extend life.
In 90 percent of cases, this care is provided right in a patient’s home. Nurses, nursing assistants, social workers, doctors, art and music therapists, chaplains, and other support staff travel to the patient and provide a range of resources to meet patient and family needs, from hospitals beds and lifts to medications, toileting supplies, and bandages.
Hospice doesn’t just provide support for the patient: It also focuses on helping family caregivers by providing emotional and spiritual support in addition to hands-on help with caregiving tasks.
For limited hours a week, nursing assistants or volunteers may help with chores, food preparation, and laundry. Volunteers can sit with a patient while a family member runs errands, and many hospices also offer respite care, where they will care for the patient in a local hospital or other facility to give the family caregiver a break for a few days.
After the patient passes away, hospice will continue to check on and support surviving family members through trained bereavement care.
It can be difficult for people to accept stepping away from curative treatments, and that can create misconceptions around what hospice is. Here’s a look at some common concerns:
Some people wait for their doctor to initiate discussions about hospice, but patients and families can ask questions about hospice at any time (and should!).
While it may feel like stopping curative treatments will make a loved one pass away sooner, that’s often not the case. In fact, a study found that people with lung cancer lived about a month longer if they were in hospice care compared with those who continued with curative treatments. When patients have their emotional and physical needs met, they may have the strength and will to live longer.
If you’re the patient in hospice, you may be frightened as you face the prospect of dying or you may feel regret about things you have or have not done in your life. Hospice providers, social workers, and chaplains are there to provide emotional support and can also facilitate family discussions and mediate when conflicts arise. They can help you talk to loved ones about how you feel, let go of things you can’t change, and find peace and forgiveness.
Because hospice can be a difficult concept, it’s important to learn and talk about it before you need it.
Having conversations helps people make choices that align with their goals. Some people want aggressive treatment until they die, while others want an end-of-life experience that does not have pain. A person with a terminal illness may have a primary goal of spending as much time as possible with family. If aggressive medical treatment interferes with that, they may opt to forgo that treatment and instead focus on taking measures to improve quality of life and time with loved ones.
As you have these conversations, it’s also a good time to make sure you have advance directives, medically binding documents that outline your wishes, such as who can make medical decisions on your behalf and under what circumstances you would want life-extending care and resuscitation. These documents may include living wills and durable and medical powers of attorney.
If you or a loved one have been diagnosed with a terminal illness, ask your health-care provider for a consultation with the palliative care team. Palliative care is the system that works to alleviate pain and is an important element of both curative care and hospice.
Talking about hospice doesn’t mean you’re committing to it. It doesn’t mean you’re not willing to get better. It just means that you’re gathering information and considering the choices that you’d like to make as you live with a terminal illness.
Palliative care specialists are trained to help patients identify their goals and to help resolve conflicts with family members. For example, a patient who wants to pursue hospice care may have conflict with family members who want their loved one to undergo aggressive treatments for as long as possible. A palliative care team can ease communication and ensure that the patient’s wishes are prioritized. Family members may find those wishes painful or disagree with them, but they are ultimately up to the patient.
Hospice care centers around one primary principle: At the end of life, a person’s wishes should guide all decisions. Death is inevitable, but suffering is not, and all people deserve choice, dignity, and control over their own experiences.