What Does It Mean to Enter Hospice Care?
The decision to move to hospice services can be intimidating for many people and their loved ones. It represents a major transition in the patient’s care. Stigma around hospice often conjures the image of people “waiting around to die.” However, the goals of hospice services are more compassionate than that, and more personalized to each patient’s needs. This article describes what exactly hospice is, what services are provided, and what a person can expect when transitioning to hospice. Only you can make the decision of whether hospice is the right choice for you or your loved one, but understanding exactly what it entails is a great way to start.
Understand the Difference: Hospice, Palliative, and Curative Care
Curative care is the type of medical care we think of most frequently. Its goal is to treat and cure a patient’s condition. This includes things like chemotherapy or surgery. When a patient transitions to hospice care, this means they and their doctor have made the choice to stop curative care. These treatments may have been deemed ineffective, or could be causing harm to the patient without producing results.
Many people use the phrases “hospice care” and “palliative care” interchangeably, but they are not the same thing. Palliative care refers to medical treatment designed to alleviate or lessen the symptoms of an illness. This can include treatments for symptoms like pain, depression, nausea, or fatigue.
Hospice care can include palliative care, but it also includes many other services. Hospice involves services like support for the patient’s family, coordination of community resources, spiritual and emotional counseling, and personal care.
What Happens When Hospice Care Begins?
Shifting the Focus of Care
In home healthcare, the focus of care is improving the patient’s day-to-day functioning. The goal is to help them become more independent, or return to a prior level of functioning. Hospice care no longer focuses on improvement. Instead, the goal of hospice is to help patients live comfortably, while helping them live in the most fulfilling way possible.
Creating New Goals
Treatment goals in hospice are different than in other medical settings, so hospice care often begins with a discussion of what’s important to you. It may not be a priority to a hospice patient to learn to shower unassisted or prepare their own meals. Instead, a patient might want to be able to sit through a visit with their grandkids, or witness a family wedding. Hospice staff will listen to these priorities, and do their best to help the patient meet their goals.
Hospice treatment also includes end-of-life planning. While some people find these questions difficult, it is an important way to make their wants heard, and to receive end-of-life care on their terms. Making these plans can also relieve a burden that is often placed on family members, either during a person’s illness or after their death. Knowing what their loved one wanted can help family members make decisions without doubt and uncertainty.
End-of-life-planning includes items like:
If they have (or would like to create) a Do Not Resuscitate order or other advance directives.
Which medical treatments they would accept, and which they would refuse.
If they’d like to appoint a family member as a medical Power of Attorney, in the event that they can no longer make medical decisions for themselves.
If they need to create (or update) a trust or last will and testament.
If they’d like the input of social workers, therapists, or religious or spiritual authorities.
If they have any special requests for after their death.
Hospice staff are not able to provide or create many of the documents listed above; however, they can help to record their patient’s wishes and connect them with the right people to create these documents. In the event that a patient provides a DNR or advance directive, the hospice staff can add those document’s to the patient record, and honor those requests in the event of a medical emergency.
Other Benefits of Hospice Care
Big Changes in Familiar Surroundings
For many, the transition to hospice care is an emotional one; in-home hospice is often a less jarring change than the transition to a facility. In their own home, patients are surrounded by familiar belongings, rooms, and people. This helps patients feel comfortable and safe. In some cases, a hospice patient can even retain the staff who worked with them while they were under the care of a home healthcare agency, meaning they go through this transition with clinicians they already trust.
Family Assistance
Family members are often heavily involved in their loved one’s care by the time they require hospice services. In many cases, hospice agencies do not provide round-the-clock care; that responsibility falls on private caregivers. However, most hospice providers offer assistance to family caregivers, to help them cope with stress and make their role easier. This includes things like:
Training on things like patient medications, safe transfer techniques, or in-home therapy routines.
Respite care, ranging from a few hours to several days at a time.
Bereavement services and grief counseling.
Coordination of community resources.
Hospice does not have to be a taboo subject. For many people, it’s a choice that allows them to receive end-of-life care on their terms, and in the comfort of their own home. Contacting a hospice agency is one of the best ways to determine if they are a good fit for you or your loved one.