When Hospice Care Fails A Family

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The only real mistake is the one from which we learn nothing.  ~ Henry Ford

A reader writes: I lost my husband from a cancer. He was a fighter and I stood by him day and night all the way for seven months. I watched him deteriorate to a skeleton and when hospice was called in they did such a horrible job by letting him suffer that I cannot forgive myself for me having to shove pain medicine into his mouth will a little bit of water in a straw. I still hear him asking me what are you doing to me? Are you trying to kill me? and he was in such pain. I hate hospice for letting this happen.
They did nothing for my husband and damaged me inside. I loved my husband for forty years and I did everything in my power to help him and keep him comfortable and then this happened in the end. I am so lonely now without him I want to cry all the time, I want him to hold me and tell me he loves me as we did everyday. Help me I am falling in the cracks of life.

My response: My dear, I hope you will accept my deepest sympathy for your loss. I am so sorry to learn of the death of your beloved husband, and sorry as well to think that your experience with hospice was so horrible for both you and your husband. There is nothing I can say to explain any of it, and I certainly don't intend to excuse it.

I can refer you to a number of resources that deal with standards for hospice care, and I can assure you that the Joint Commission on Accreditation of Healthcare Organizations has a set of standards for hospices in this country. If you go to the Care Giving Links page on my Grief Healing Web site, as well as the Organizations, Directories, Information page, you'll see a number of links to relevant sites, including these:

Hospice Net - Death, Dying, Caregiving, Grief

Hospice Foundation of America

Hospice Education Institute

Unfortunately, of course, not all hospices are the same, and not all of them adhere to the same high standards of patient care. As a grief counselor who served with the bereavement staff of an outstanding hospice organization for 17 years, it breaks my heart to hear horror stories like yours.

Have you considered contacting the hospice that served your husband and asking for a meeting with the administrative and clinical personnel, so you can get your questions answered and your concerns addressed?

If you haven't already done so, I want to gently suggest to you that this could be a very important first step in your own healing process. You may not feel ready or able to do this right now, and if that's the case, I ask only that you think about doing it, maybe some time in the future when you feel stronger than you are feeling now. I know that when something is not right about the care a patient receives at the hospice where I worked in Phoenix, Arizona (Hospice of the Valley), the administrative staff and the clinical staff stand ready and willing to meet with the family to discuss and resolve whatever issues may exist. The philosophy behind that policy is simple and straightforward: It's the only way we can fix things that may go wrong. First we need to be made aware of the problem, then we need to investigate what went wrong and do what we can to fix it, so that at the very least it won't happen again to another family.

When you feel ready to do so, I encourage you to consider writing or calling the hospice that served your husband and asking for such a meeting. You might think of it as something you can do for your husband as well as for yourself -- and for other families who will use this hospice's services in the future as well.

As for finding your way through your own grief journey, I hope you will consider reaching out for the help and support you need and deserve. The work ahead of you is difficult, but you don't have to do it all alone. There are many resources available to you, both "in person" and online. I don't know what part of the country you're in, but you can contact your mortuary, church or synagogue, public library, hospital or primary care physician to learn what bereavement resources are available in your own community.

Since your message came to me through Self-Healing Expressions, I assume you already know about my online e-book and/ or e-mail course, The First Year of Grief: Help for the Journey.

You're also most welcome to join the online Grief Healing Discussion Groups which I administer and moderate, and which include a forum for Loss of a Spouse, Partner or Significant Other. I can assure you that you won't find a more compassionate, caring group of people anywhere else. Our members are simply wonderful, as I think you will see if you simply visit the site and read some of the messages already posted there. Read more about our site here: About Grief Healing Discussion Groups.

I hope this information proves helpful to you, my dear, and I hope it brings you some small measure of comfort to know that I am thinking of you, and holding you gently in my heart. 

Your feedback is welcome! Please feel free to leave a comment or a question, or share a tip, a related article or a resource of your own in the Comments section below.
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© by Marty Tousley, RN, MS, FT, DCC

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