What you don’t know about hospice care (but should)

Mercedes Pacheco, MD

by Mercedes Pacheco, M.D.

As a hospice physician with HopeHealth, I care for people with a progressive illness after cure is no longer an option. This final phase of life often comes with significant emotions as well as complex symptoms related to the illness. It’s a vulnerable time for individuals and families, and my colleagues and I try to offer comfort and hope.

What is hospice

Many people hesitate to start hospice because they think it means giving up. On the contrary, hospice is a special, positive experience focused on enhancing quality of life.

Hospice is a philosophy of care with two important principles:

  • Care providers with different professional backgrounds work as a team to address physical, social, emotional and spiritual needs.
  • We focus on respecting the expressed wishes and goals of the individual and family.

When speaking with patients, I ask, what is most important to you? What are your hopes? Part of my role is to preserve the patient’s ability to have choice, control and a sense of dignity while navigating this part of life.

With hospice, the goal is to help you live as well as you can for as long as you can.

You can also think of hospice as a type of medical intervention based on the course of your progressive illness and your wishes. Hospice treatments are designed to manage symptoms and offer comfort and support as you adjust to the changes that come with your illness. In contrast, curative treatments like chemotherapy or surgery are designed to overcome disease and promote recovery. With hospice, the goal is to help you live as well as you can for as long as you can.

When to start hospice

Hospice is not just for the final days or weeks of life. If you or a family member has simply reached a point where recovery is not possible—perhaps curative treatments are harming more than helping—you might wish to ask your doctor about hospice.

To qualify for hospice coverage through Medicare, a physician must certify that life expectancy is likely six months or less. Some insurers allow patients to start even earlier. The sooner you start, the sooner you can take advantage of the extra support hospice provides. In fact, many patients and families who receive hospice say they wish they had known about it sooner.

Myths about hospice

Let’s correct some common misconceptions about hospice:

  • You do not have to pay for hospice. Hospice is a medical benefit covered by Medicare, Medicaid and many private insurers. HopeHealth will provide hospice to anyone who qualifies regardless of ability to pay.
  • Hospice does not hasten death. Hospice offers comfort and support through the natural dying process. Clinical research has shown patients may live longer with hospice.
  • You do not have to be homebound to start hospice. If able, you can still travel, visit with friends and family, attend social groups (or adult daycare for patients with dementia), and do the other activities you enjoy while receiving hospice care services.

Hospice care is the promise of comfort, control and dignity for individuals and their families.

Your hospice care team

When you start hospice services, an admissions nurse will initially assess your condition and needs. You will then be assigned a team of caregivers specially trained in hospice. At HopeHealth, this team includes:

  • A nurse care manager to serve as your main point of contact and make regular visits.
  • A hospice physician to oversee your medical care and consult with your primary care physician or the specialist managing your illness. (You can and should continue to see your usual doctor while receiving hospice if you are able.)
  • A social worker to help you navigate the practical and emotional challenges associated with end of life.
  • A chaplain to offer counsel on spiritual matters.
  • A hospice aide to help with dressing, bathing and other activities of daily living, if needed.
  • Caring volunteers with special skills in alternative-support services, such as pet therapy, hand massage, music therapy and Reiki.
  • A grief support professional to counsel family members both before and after the loved one has died. Learn more about the grief support services at HopeHealth’s Center for Hope & Healing.

At HopeHealth, we have dedicated teams that provide care for patients at home, in long-term-care facilities like nursing homes, assisted living facilities and in our inpatient hospice facilities, the Philip Hulitar Hospice Center in Providence, RI, and McCarthy Care Center in East Sandwich, MA. Learn about our hospice services.

Hospice offers medical, social, emotional and
spiritual support

 
The hospice approach calls for providing care from all angles.

Hospice physicians and nurses offer medical relief from symptoms causing distress, including pain, shortness of breath, anxiety, severe fatigue, insomnia and depression.

Some treatments have side effects that patients may or may not wish to treat, so we ask our patients, what is acceptable to you? Together, we develop a personalized care plan.

Hospice social workers have two roles. First, they are well-versed in the practical matters related to insurance, financial planning, legal counseling, arranging for services like custodial care or meal delivery, and making funeral arrangements.

Second, they serve as a caring, compassionate guide for you and your family through the journey of living with a terminal illness and, ultimately, of dying and death. This support could take the form of a family meeting, a “kitchen table talk,” or referrals to outside counseling.

The goal of hospice is to preserve your ability to have choice, control and a sense of dignity while navigating this part of your life. Your voice is our guide.

The realm of spiritual care in hospice is as broad as the topic of spirituality itself. Anyone facing profound questions—Why is this happening to me? What will happen to me?—might take comfort in chatting with a hospice chaplain. You don’t have to be religious or subscribe to a particular faith to receive services.

For all of us who work in hospice, we feel a powerful responsibility to bring compassion and clarity to individuals and families who are feeling helpless. Even when there is no opportunity for curing, there is still a tremendous opportunity for healing.

Dr. Mercedes Pacheco is medical director for hospice services at HopeHealth, a non-profit provider of hospice, palliative care, home care, and dementia and Alzheimer’s support services, serving Massachusetts and Rhode Island.


Questions about starting hospice care?

Ask us at (844) 671-HOPE or Information@HopeHealthCo.org.

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