There are many benefits to hospice care for you or your loved one. However, many people are still resistant to moving to hospice care. Making the decision to shift a loved one to hospice care can be scary for both families and the loved one. This is an understandable response. It is a moment of direct confrontation with mortality and the prospect of death, and that can be terrifying for most people.
Often, it’s not dying that most are afraid of so much as the process of dying – the fear of pain or the uncertainty of who will take care of loved ones or pets. There’s also the concern held by many family caregivers with confronting the things that come during this process of dying. Not many caregivers have had to deal with delirium or confusion in a hospice patient, or issues with choking or breathing issues, or issues with pain. However, many hospice care teams will take the time to counsel and train caregivers on what they may encounter, and how best to handle these, oftentimes, scary situations.
Many of these fears are based on widespread myths of what hospice care is and isn’t. It doesn’t have to be a scary prospect. Here are some myths that can pull back the curtain on the scary prospects of hospice care for your loved one.
It is the doctor’s responsibility to bring up hospice.
It’s true that a doctor must determine whether your loved one meets eligibility requirements for hospice services based on prognosis. However, the patient or the caregiver can begin the conversation. Hospices often hear from patients and their families that they wish they would have received hospice care sooner, so it’s a good idea to tell doctors at the time of diagnosis of a life-threatening illness that you’re open to hospice care when appropriate. Patients and caregivers can also speak with a hospice directly without a physician’s referral to learn more about their services.
Hospice is giving up and losing hope.
This is a common concern for patients, caregivers, and families alike. Hospice focuses exclusively on a patient’s comfort and dignity as they approach end-of-life. When a patient is diagnosed with a serious illness, the first thought is about stopping or changing the course of the illness. Sometimes, however, a cure doesn’t exist, or aggressive treatment doesn’t work, or is overly burdensome to the patient. When this happens the focus of treatment changes, and it becomes about quality of life, comfort, and peace. Patients want to be close to loved ones, their homes, and the things that bring them comfort.
Hospice makes this possible by focusing primarily on quality of life. Hospice provides pain and symptom management in coordination with doctors, nurses, and a team of professionals (social workers, spiritual care coordinator, etc.). When a patient chooses hospice care, they or their caregiver are the ones in control. Hospice care can be stopped or paused at any time. Medications or treatments can be stopped at your discretion. It’s about working with the patient, caregivers, and the hospice team to find what is best for the patient in their final days.
Hospice is where people go to die.
Hospice often takes place in a patient’s home, assisted living community, or other long-term care facility. The patient won’t need to “go somewhere” to receive treatment unless pain or symptoms cannot be adequately managed at the location they’re most comfortable. It’s about where the patient is more comfortable as they approach the end of life.
Hospice is for people whose death is hours or a few days away.
Even though hospice care neither hastens death nor prolongs life, studies have shown that patients with certain illnesses live somewhat longer with hospice care than those with the same illness who don’t use hospice care. Also, according to the Hospice Foundation of America, many families report wishing their loved one had received hospice care much earlier in their illness. Hospice care can be utilized up to six months before an expected passing. This allows loved ones time with families, friends, pets, and allows the chance for extended support from the hospice care team.
Hospice can expedite death.
Hospice does not hasten death and does not help patients pass. The main focus of hospice care is to relieve symptoms (pain, anxiety, etc.) at the end of life. This allows natural death to occur with peace and dignity. The medications and treatments used in hospice care are for symptom relief only and never to expedite death.
Hospice is only for the elderly.
Hospice care can be utilized for anyone, any age, who meets the criteria. There are different government regulations for hospice care for patients under the age of 18 than adults, and often allows for concurrent care focused on both cure and comfort.
If I enter hospice, they will take away my medicines.
The goal of hospice care is to ensure that patients only receive the medicines they need. The doctors and nurses (in coordination with primary care doctors) on the patient’s hospice care team review all prescriptions and decide which remain beneficial for the current goals of care.
Hospice is scary.
Death can be scary for many people. The thought of and process surrounding death is something most people fear—especially when a terminal diagnosis is received. Hospice care offers comfort, compassion, and a support network to help patients, their families, and their loved ones throughout the process of end of life. Many hospice patients find that hospice care makes the end of life much less scary. Hospice care teams coach families in caregiving (including offering respite care), offer emotional support, assist with navigating medical benefits, and, most importantly, offer grief counseling. All of this provides patients, caregivers, and loved ones a safe and nurturing space to process the end of life. It may not take the fear away completely, but hospice care does strive to provide everyone involved a warm and ideal setting for your loved one’s passing.