Top Takeaways

1. Hospice care provides support to people suffering from life-threatening illnesses
2. Acknowledge that end-of-life decisions are emotionally complicated for you as the caregiver and your loved one
3. As a caregiver, you can help your loved one by educating them about these services and respecting their decision
4. The support of hospice care encourages families to spend quality time together

Intro 

As a caregiver, you face numerous challenges in deciding on the best and most appropriate care for your loved one. It is human nature to work towards recovery and rehabilitation after an injury or coping with a chronic medical disease.

One of the hardest decisions to make is when you, as a caregiver, and your loved one choose to accept comfort care over aggressive treatment. The term hospice care is probably familiar to you. Hospice care can greatly benefit you as a caregiver and the person you are caring for, but how do you know it is time for hospice care? Transitioning to comfort care is a very personal decision, and we can help you through the process.

What to Know About Hospice Care

Through the years, hospice has gained respect as an ethical and humane source of care for people at the end of their life. It is not unusual for caregivers to believe that hospice hastens death or that it means that their loved one will die soon. In fact, some people live longer on hospice, and a few recover to the point where they can go off hospice. It is true that the requirement for hospice is certification from a physician that your loved one has a terminal condition likely to end in death in six months. Starting hospice sooner rather than later provides more time for relief from suffering and focuses on improving quality of life. Hospice:

• Acknowledges the patient’s decision to cease treatment for the condition that qualifies them for hospice
• Emphasizes comfort care, relief from suffering, pain control, and spiritual/bereavement support
• Will treat other medical conditions that affect the quality of life like infections, the need for oxygen, eye care, etc.
• Can be provided anywhere the patient lives- at home, assisted living, any other senior care setting.
• Can be started and stopped multiple times as long as the patient continues to meet hospice criteria
• Is covered by most insurance plans

What Day to Day Care Looks Like on Hospice

Day to day care on hospice is provided where the patient is, whether it is at home, assisted living, or even in the hospital. At home, the level of care will vary to some extent based on the patient’s needs but generally speaking, you can expect a nurse to come in several times a week and an aide 3-4 times a week for a short time to help with activities of daily living. A nurse is on call 24 hours a day and will come when needed. In general, on hospice, you would not seek any treatment for your terminal condition and going to the hospital could violate the hospice agreement.

What Are the Costs of Hospice Care?

Hospice is fully covered under Medicare, Medicare Advantage plans, Medicaid, and most private insurance. The professional services themselves are reimbursed by insurance, but the patient may have to pay for additional medical equipment and supplies. 

What Are the Gaps in Coverage with Hospice Care?

This is where things can get very complicated. As people become more and more disabled due to their terminal condition, their care needs may increase. But hospice will only provide the services dictated under insurance, which can leave families having to fill in those gaps of care. Most families choose to fill in where Hospice can’t or hire private caregivers or a combination of both. For example, if your loved one needs assistance getting out of bed or a chair every day, Hospice cannot provide that level of care. 

How to Decide When it is Time for Hospice Care

Over time families have accepted and turned to hospice more than they did in the past. Hospice is not an irrevocable decision. You and your loved one can decide at any time to go off hospice. If your loved one improves and chooses to pursue active recovery, they have the right to do so. Some people start with palliative care and then transition to hospice.

1. Your loved one is unlikely to improve with continued treatment of their disease.
2. Your loved one has pain and suffering. Hospice professionals are experts in pain control that relieves suffering but keeps the patient aware and conscious.  However, closer to the end of life, your loved one may sleep most of the time and have limited awake time to converse. 
3. You, as a caregiver, need more support in the home. Support from hospice includes nursing care, an aide to assist with activities of daily living, social work, and medical equipment.
4. Accessing and undergoing treatment is arduous, complicated, and exhausting
5. Your loved one has accepted that this may be the end of their life and prefer to have quality time with friends and family. 

Hospice Care for You and Your Loved One

Hospice care acknowledges and supports a person’s decision to focus on the quality of life while coping with a terminal condition. You can help as a caregiver by following these steps:

• If possible, do advance planning, including  a living will, before your loved one needs it
• Acknowledge what your loved one has been through. If they want to continue to pursue treatment, that is their right.
• Share your concerns and offer information about hospice. Address any questions and fears.
• Talk about options together in a collaborative and respectful way 
• Be flexible and accept that your loved one’s decisions may change frequently
• Appreciate the time you have together and  

Acceptance of the end of life is a uniquely emotional and spiritual journey. Knowing what to focus on and how to honor your loved one’s wishes will make the experience one that you both can respect.