Why you should consider Hospice or Palliative Care
Research has shown that it is often a woman making caregiving decisions regarding loved ones, be it for children, parents, in-laws, or siblings. However, it’s helpful for anyone involved in caring for a seriously ill loved one to know options for help that exist.
People generally think highly of “hospice” and “palliative care” services, and are glad to know they exist, yet often delay or push away any discussion of hospice or palliative care when it comes to their own personal situation.
Patients and families experiencing serious or terminal illness have endured many losses which include their hopes, dreams, and understanding of the world. These same people still want to live beautiful, quality lives, despite the illness they are dealing with. It’s important to address the common misperceptions about “hospice” and “palliative care” so people can be more open to accepting the help of hospice or palliative care, which can make a tremendous difference in quality of life of the patient and family.
Facing serious illness and the end of life are hard for anyone. Our healthcare system tends to be a battleground with death the enemy and ultimate failure. Yet, despite medical advances, declining health, death, and loss have been around as long as we have lived. Sometimes, medical treatment can amplify suffering and the terms of the battle need to be reconsidered.
Here’s how the expert services of hospice and palliative care may help you:
Many think hospice is going to invade their privacy. Central to hospice care is respect of the patient and his or her family. As hard as it is to imagine, hospice can help give beautiful time — some of the happiest of people’s lives. Hospice offers expertise and eases anxieties. Patients and families often grow in spiritual and emotional peace.
Most people are ignorant of what hospice does until they actually experience it.
Hospice addresses fears of suffering, dying in pain, being kept alive hooked up to machines, being alone, being a burden, or losing control. We help navigate caregiving decisions.
Care from a Medicare-certified hospice and palliative care agency is the gold-standard for high-quality end-of-life care in all settings (home, nursing homes, assisted living, hospitals, and hospice facilities). Having hospice and palliative care specialists beside you is like having good obstetric care for pregnancy or orthopedic care for a joint replacement.
To qualify for hospice, a person must be living with an illness with an expected prognosis of 6 months or less. Cure is no longer likely or aggressive treatments are not desired. Therein lies the intimidating part – It’s a misperception that accepting hospice means knowing when you are going to die and that it will be soon. Hospice isn’t “giving up”. The actual routine of care doesn’t change but is generally improved. What changes is the people on hospice often feel better related to specialized attention to physical symptoms and quality of life of the patient and family. Research has shown extended survival of patients with lung, pancreatic and colon cancers who have hospice care.
People are often discharged from hospice. Sometimes, progression of the illness stabilizes, or patients and families can discharge hospice if a different plan, such as resuming chemotherapy, becomes an option or desired.
Don’t expect your doctor to bring up the option of hospice. While many do, many don’t. You have a right to know about all options and express your interest in this type of care.
There are many hospice agencies. You need to voice your choice in agencies if you have a preference.
Over 50% of hospice agencies in the United States are for-profit compared with 5% in 1995. If you care that an agency’s mission is “non-profit”, ask the agency about this.
Hospice provides guidance on what to do or expect. A nurse is available 24-hours a day to call or visit for questions or changes in condition.
Support at the time of death is available.
Hospice aides can provide bathing, personal care assistance, and teaching about caregiving tips.
Social workers help ease psychosocial needs, such as caregiver relief, and family and / or financial concerns.
The patient and family’s spirituality is supported. A chaplain is available if desired.
Volunteerism is deeply rooted in a grassroots hospice agency. Specially trained volunteers provide friendship and caregiver relief.
Pharmacist and dietitian consultation is available.
Alternative therapies (physical, occupational, speech) are sometimes included in the plan of care. Additional therapies (art, massage, music, pet, Reiki) are available – for both patient and caregiver!
Medications and medical equipment are paid for by hospice. Medicare and Medical Assistance cover hospice at 100 percent.
A “palliative care consult” can be requested to assist with symptom issues, caregiving support needs, and goals of care discussions. While the service is more consultative than hands-on, like hospice, the same expertise is offered to help navigate the challenges of any stage of a serious illness. Ask your doctor for a “palliative care consult” if you’d like the assistance of this specialty service. Patients are often discharged from Palliative Care after goals of the consult have been achieved.
Quality of life and patient and family satisfaction are known to improve when hospice or palliative care become involved. The most important thing hospice and palliative care teams try to do is let people know that everything about them matters. Don’t be afraid to reach out and ask how hospice or palliative care can help you.