How to Have the Best Hospice Experience Possible

 In Advice, End-of-Life Planning

If you have a loved one nearing the end of life you may be considering working with a hospice in the future, which is a very good choice. Studies have shown that patients who receive care from hospice at the end of life can experience greater quality of life and better symptom control, but might also live longer than patients who do not enroll in hospice.

But not all patients are alike and not all hospices are alike. There are some steps you can take to ensure that your loved one receives the best care and that everyone involved has the best possible experience during this challenging time.

  1. Choose your hospice wisely
    As already mentioned, not all hospices are alike so you will need to do your homework before choosing which provider to work with. First of all, make sure the hospice you pick is accredited (meaning they’ve met and maintained certain quality standards) and Medicare-certified (the hospice is able to bill Medicare for services.) Next check the Hospice Compare website to get more information about each of the hospices you are considering. Also get word-of-mouth recommendations to find out if other members of your community have had positive experiences with the hospice. The more information you gather, the better the decision you can make.
  2. Have a discussion with family members
    It is important that all family members who are part of your loved one’s “care network” understand why hospice is being considered and the advantages it offers. If anyone has doubts or misgivings about this decision it may cause conflicts later on so it’s best to talk together now and address any issues in advance. Often when people have negative feelings toward hospice it is because they lack adequate information or have a misperception about hospice care. Positive discussions can help provide education and insight into the hospice choice so that everyone can feel comfortable with the process.
  3. Talk to your medical provider
    If possible it can be helpful to have your loved one’s medical provider make a referral to hospice. However, like other people in our society, some providers are not comfortable talking about hospice or end-of-life issues, so you may be met with a negative response. Don’t be discouraged by this because each hospice has its own medical provider who will be in charge of your loved one’s care. But by initiating a discussion with your private physician you might actually help inform him or her about the benefits of hospice for future patients.
  4. Know your loved one’s wishes
    Does your loved one want to receive care at home throughout the end-of-life process? Who would they want to be surrounded by during the last days of life? These are important questions that you should have answers to before you decide where to engage hospice care. Take time to have a thoughtful discussion so that you are clear about your loved one’s preferences. Some people adamantly want to remain at home but others prefer to receive care at a facility where family members can be present as visitors without carrying the burden of care. These choices should guide all of your decisions as you work to fulfill your loved one’s wishes.
  5. Determine who and how to provide 24/7 care
    Before hospice care at home begins it is important that you recognize that you will be responsible to provide around-the-clock care for your loved one. Hospice will provide a support team of a nurse, home health aide, social worker, chaplain, and volunteer, who will make regular visits and supervise the care you give. But you will either have to look after your loved one yourself or hire an in-home caregiver. It is extremely challenging for one person alone to be a full-time family caregiver so that’s why it’s important to have the entire family in agreement about the choice for hospice in the first place.
  6. Organize and plan ahead
    During a family meeting find out who is available and willing to help share caregiving duties. You will need some people who can stay in the home on certain days and others who will take care of running errands, paying bills, making phone calls, preparing meals, etc. By envisioning how you will share the care in advance you can find a suitable job for each person and spread out the tasks so that no one person is over-burdened. This advance planning will help you avoid conflict and burnout as the days go on.
  7. Get informed about the end of life
    The more you know about what to expect as your loved one nears death the more you will be comfortable providing care. Your hospice should be able to offer you some pamphlets and other reading material, but here are some books that you will find very helpful to have at the bedside: Dying: A Natural Passage by Denys Cope RN; Present Through the End by Kirsten DeLeo; and Living with Dying: A Complete Guide for Caregivers by Jahnna Beecham and Katie Ortlip RN.

If you follow these steps to prepare in advance before your loved one begins hospice care you will very likely have a much better experience than if you enroll in the midst of a crisis without being informed. The right hospice provider can help you and your loved one find peace and comfort at the end of life and that will make all the difference for you now and in the future.

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