The Vital Role Of Family In Hospice Care

Woman sitting up in bed with husband and daughter on each side of her holding her

Hospice is a specialized care program that is typically offered to people who have six or less months to live due to a terminal illness. There are some hospice programs that offer long term care if needed and can be offered in the home, nursing home, assisted living facility, hospital, or hospice house.

Fast Hospice Care Facts and Figures


  • 1.43 million beneficiaries were enrolled in hospice care for at least one day.
  • The average length of hospice care for Medicare beneficiaries was 71 days.
  • The median length being 24 days for Medicare beneficiaries.
  • 98% of hospice care was provided at the Routine Home Care level.
  • There are currently 4,382 Medicare-certified hospices in operation with most hospices averaging less than 50 patients.
  • Hospice care is not a permanent decision, there have been patients to move off hospice due health improvements.

Hospice care teams include, but are not limited to, doctors, nurses, social workers, and pharmacies, all with the focus of managing a patient’s illness and giving them the necessary emotional, spiritual, and physical support. Hospice also offers benefits such as:

1. Specialized Care – a hospice environment can meet the needs of individuals that require more in depth care, offering comfort and support during the final days.

2. Insurance – hospice care is covered by Medicare, which is the most common health insurance in the United States allowing it to be easily accessible to most people.

3. Personal Assistance – hospice can take care of daily tasks such as laundry, food prep, personal hygiene, and bedside care.

4. Bereavement Support – after death, most hospice centers provide bereavement support and grief counseling to families which include visits from trained grief counselors, grief support groups or remembrance services (level of support varies by hospice).

5. Team Approach – hospice knows that caring for an ill patient is exhausting on all levels which is why the hospice care team is available to patient and family to help provide comfort, support, and rest for tired family members.

The Family Approach

Now while turning to hospice can be an extremely difficult decision for family members, family remains the primary support for a hospice patient. Family members and loved ones being active in the patient’s life even during hospice care is incredibly important for emotional and spiritual support. While hospice takes care of pain and symptom management, has access to community resources, provides the necessary medical equipment and being able to connect with patients on a surface level – family members are there to provide reassurance, love and be an advocate for their loved one.

Being admitted to hospice is not just nerve wrecking for the family but for the patient as well, giving up a lifetime of freedom, being completely dependent on others and accepting the inevitable is not always easy on people, especially with independent individuals. Family members can support loved ones in hospice by:

Advocating For Their Loved One

By working closely with the hospice care time to create a personalized hospice plan, families can accurately reflect their loved one’s preferences. They can also make sure the hospice care team knows their last wishes including how they would like to be cared for, the level of intervention, their end-of-life options, and other related concerns.

Providing Emotional Support

Providing emotional support to a loved one is one of the most important things friends and family can do. Be sure to speak calmly and offer reassurance while reminding your loved one how you value them, the impact that they had during their life, revisit treasured memories, and talk about their interests or hobbies. If you are not sure what to say to your loved one, simply lend them a listening ear or a shoulder to cry on. Providing physical acts, such as holding hands, is also incredibly soothing for patients during an emotional time.

Creating A Comforting Environment

If you can have any control over the environment, create a calming one. Avoid loud music and bright lights and opt for soft versions of both. It has been proven that this helps improve mood and alleviate stress for patients. Calming, familiar music is also proven to help evoke specific memories. Be sure to also keep the temperature comfortable, the bed dry and limit any distracting noises or chaos.

Girl with turban on laying on her side in bed with man sitting beside her showing her photographs

Arranging Visits (Virtual or In-Person)

Seeing a loved one ill is hard, but avoiding them does not help anyone, patients more than ever want to feel connected to their family and friends. Be sure to have regular in-person visits, have scheduled phone calls or do virtual visits via Skype or Zoom. Be sure to remind the patient that they are loved and that you will be in contact with them again.

Choosing Hospice

Though choosing hospice is never an easy choice for family members, it is important for them to not feel defeated over the decision. Hospice truly is a family affair that includes patients and loved ones into care. With family members and the hospice care team coordinating together, it can ensure that patients feel comfortable, valued, respected, loved and heard during this emotionally exhausting time.

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Research For Life - Understanding Whole Body Donor Consent

Hello, my name is Garland Shreves, CEO of Research For Life. I want to take a moment to discuss some very basic information with you regarding consent forms, in general, that you may encounter when considering to donate to a whole body donor organization.

First and foremost, you need to understand and read the consent form, also known as the authorization form or document of gift, so you know what you are consenting to.  Ask questions of the organization if you don’t understand something. 

 All states require, under the Uniform Anatomical Gift Act, that consent be granted by an authorized agent of the donor or self-authorization before death.

Each state defines who in the consenting class has the most authority to direct donation. Such as the medical power of attorney, spouse, children, grandchildren, siblings, etc. and differs slightly in each state. 

Consent may be given by means of a verbal recorded consent or by a written document of gift.

Research For Life uses a written consent form which can be found on our website.

Understand that the donor or authorizing agent is giving the body to an organization. Once given it belongs to the organization to use in accordance with the consent form.

In other words, the donor organization is free to use the donor provided it does so within the terms

of the consent, it may not use the donor in a manner not consented too.  

The consent may state how the body may be used.  Educational and/or research purposes or some other purpose may be stated or in the discretion of the donor organization.

Research For Life provides cadavers and/or anatomical specimens for education and research purposes and does not do ballistic testing.

The consent may state that the body will be used in whole or in parts. It may also state that the anatomical parts may be used domestically and or internationally.

And most consents will cover some basic things like consent to test the donor for diseases and order medical records to help best determine the medical suitability for the donation.

The consent may also touch on issues like for profit or nonprofit status and if the donor or anatomical specimens will be used by one or more or both types of entities.  Remember that regardless of an organizations tax status they all charge fees to end users who order anatomical specimens and offer those specimens to both for profit and nonprofit entities.

From the very start of the donation process costs to the donor organization begin. 24-hour answering service, transport team to respond 24/7, qualified trained staff paid a livable wage with benefits and retirement, electric, gas, phone, insurances, building payments, maintenance, medical director, and regulatory requirements, and cremation fees. And these are just some of the expenses that an organization may have to cover.

Another item you may see on most authorization forms is a release of liability, a hold harmless agreement, excluding misconduct of course.  

Research For Life states clearly it will not and donor or agent agrees that Research For Life will not be held responsible for acts of third parties in connection with the donation.

Another item that reduces a donor organizations liability is the Anatomical Gift Act prohibits criminal, civil or administrative actions provided there is no intentional misconduct on the part of the donor organization. In other words, if the donor organization acted in good faith it is immune and provided some protection from lawsuits.

Another important part on a consent form is the person signing the authorization attests (affirms) that they have the authority to direct the donation. The donor organization accepts the authorizing agent’s authority in good faith barring any information known to it at the time of donation that would contradict the authority of the person authorizing donation.    

Remember, should you decide to register, tell your family and friends about your decision.

Also, the donation authorization form is not valid until notarized or signed by two witnesses; one witness must be non-family or disinterested party. 

Consent forms contain other important information that you need to read and understand.

All documents of gift or authorizations can be cancelled prior to death.

I want to thank you for taking the time to watch this video and I hope it helped provide you with some basic information regarding whole body donation consent forms.  Thank you.