Families and Patients Prefer Hospice Care
by Lisa DiFalco
The benefits of early enrollment to hospice care provide improved quality of life and may help patients live longer. In addition, families are prepared for a loved one’s death and it reduces the chances of a complicated bereavement. Hospice care also decreases the stress on primary caregivers and families, providing them useful support for practical, emotion and spiritual needs.
When patients and families have the choice of hospice care or hospital care, significant benefits are seen in hospice. Two recent studies show that both patients and their families prefer hospice care over the alternative. Ruth Keinpell, study leader, and the team published their findings in BMJ Supportive and Palliative Care. She shared:
“Hospice care can provide patients and families with a better dying experience.”
Another report, published in the Journal of the American Medical Association, end-of-life care issue, supports these findings. Lead researcher Dr. Alexi Wright, associate professor of medicine at Harvard Medical School in Boston, said:
“Our findings are a powerful argument for the importance of advance care planning. …In this study we found that patient’s preferences influenced the care that they received. Now we need to ensure that patients and their family members have the information they need to make choices about their end-of-life experiences and plan for it.”
As physicians, nurses and other health professionals are tasked with having end-of-life conversations with patients and their families, they can share the benefits of hospice care for those that are prognosticated to have six months or less to live. With hospice care able to be delivered in a variety of settings, including the home, families can get the assistance they need in the environment that is most comfortable for the patient. Understand what families are saying about hospice care and some of the resources available for patients and families.
Studies Show Hospice Care Benefits
Dr. Alexei Wright, collected information from over 1,100 cancer patients. Interviews were conducted with family members of patients. When asked whether or not a loved one had excellent end-of-life care:
- 42 percent of families in the study with a loved one that died in a hospital were happy with the level of care; and
- 57 percent of families in the study with a loved one that died in a hospice or at home believed they had excellent care.
Also, family members of patients that received hospice care more often reported that the loved one died in their preferred location. Dr. R. Sean Morrison, director of the National Palliative Care Research Center, said:
“Patients who have access to hospice care have a better quality of death and a more peaceful death than patients in hospitals.”
Ruth Kleinpell and her research team observed over 163,000 patients in Medicare that had died in 2010. Approximately 47 percent of patients received hospice care during their last six months of life. They found a number of benefits for patients including:
- Fewer deaths during an ICU stay or in the hospital;
- Fewer hospital days;
- Improved pain control; and
- Higher patient satisfaction ratings.
Hospice care not only benefits the patients with medication and equipment, but home visits from chaplains, social workers and other service providers also help both the family and patient. Susan Miller, hospice and palliative care specialist at Brown University School of Public Health said:
“Hospice care offers symptom management, emotional and spiritual support, and it’s a Medicare benefit.”
Talking Hospice and End-of-Life with Loved Ones
Many family members are understandably uncomfortable about discussing the next steps and final directives with an ill family member. Children, spouses and family members often do not want to give up hope, feel a sense of guilt with some choices, or do not know of the options available to ease the discomfort and improve the last days of a loved one. These sensitive discussions can do much to help both the loved one and their family, friends and partners find peace, get direction and ensure that the patient is getting the care that they want in the time that they have left. Resources for families include a few mentioned by the recent article, How Doctors Can Have End-of-Life Conversations with Patients. Consider:
- Viewing The Conversation video showing a conversation between physician, patient and family. The physician compassionately goes through advance care planning questions with the patient and spouse;
- Watching Extremis, a new Netflix documentary short that follows patients, families and doctors during a range of end-of-life scenarios at Oakland’s Highland Hospital’s intensive care unit;
- Understanding more about advance directives by state provided from the National Hospice and Palliative Care Organization;
- Viewing the Frontline video, Being Mortal, from the perspective of Atul Gawande, Boston surgeon, as he shares his experience with his father as he nears his end of life.
- Getting basic facts with Learn About End-of-Life Care, with valuable information on selecting a hospice, basic hospice facts, and Medicaid and Medicare, from the National Hospice and Palliative Care Organization.
- Reading What Questions Should I Ask About Hospice Care?, offering a list of questions to ask when deciding on a hospice program. Patients and caregivers will find information on other related topics. The resource is offered from Hospice Net.
- Looking for a Hospice with Find a Hospice, a searchable directory from NHPCO.
- Understand legal planning applicable to end of life care in different states throughout the U.S. by reading Create a Living Will and Health Care Power of Attorney in Your State by NOLO.
A loved one’s physician can initiate the discussion with families. They may also be able to assist in referrals for health professionals that would make up a loved one’s hospice care team. Individuals on the team are available to patients seven days a week, 24 hours a day, when patients select to have hospice care provided in the home. In general, a hospice care team will include doctors, nurses, home health aides, spiritual counselors, social workers, pharmacists, bereavement counselors, other professionals and trained hospice volunteers. Hospice care can often be financed through the Department of Veterans Affairs, private insurance, Medicare and Medicaid.
Patients and families need a healthcare system that takes their preferences into account to create a better dying experience. Important conversations can help the patient with their journey, deliver hospice care services to affected patients and caregivers, and give some level of peace to the patient and family. There is a time when comfort for both the patient and the family is the most appropriate medical and humane response.