What is Palliative Care and Hospice?
If you have been told that your loved one is terminally ill, this article will help you identify palliative care, hospice, advanced care planning, Five Wishes, and questions to ask during this difficult time. Let’s first look at palliative care,which helps individuals improve their quality of life by providing prevention and relief of suffering, early identification, holistic assessment and treatment of pain, and support for physical, psychosocial, spiritual and bereavement issues (WHO, 2008). Hospice, on the other hand, offers care when curative medical treatments no longer enhance quality of life. Although Hospice is most often provided only at the very end of the terminal illness, it can be provided at any point once the patient is told they are terminally ill. The Hospice Medicare Benefit specifies the services to be provided to Medicare beneficiaries who choose to receive hospice care if they have a medical prognosis with a life expectancy of 6 months or less if the illness runs its normal course (www.hospicefoundation.org)
What is Advance Care Planning?
You might be struggling with whether or not to tell your loved one that he or she is dying. As a hospice bereavement coordinator I helped many families break the bad news. Ira Byock, author of The Four Things That Matter Most, maintains that people who are aware they are dying, can improve relationships in their life by saying: Please forgive me, I forgive you, thank you, I love you and good-bye. In anticipation of death, advance care planning is essential if a person’s preferences for end-of-life care are to be communicated and honored.
Advance care planning involves decision making, expressing treatment preferences, and completing documents that communicate the patient’s values and beliefs for their health care when they can no longer speak for themselves. An important conversation is medical power of attorney which is a health care proxy or health care surrogate. It allows your loved one to name a representative to make health care decisions on their behalf should he or she become physically or mentally incapacitated. Is that person you?
What Does Your Loved One Wish For?
Do you remember as a child asking for three wishes? Well now you have an opportunity to ask for five. Five Wishes has become America’s most popular living will because it is written in everyday language and helps start and structure important conversations about care in times of serious illness. Five Wishes is available at Aging with Dignity, and will guide your loved ones who are terminally ill in speaking with their loved ones about their wishes should they not be able to speak (http://www.agingwithdignity.org). Five Wishes lets the family and doctors know:
- Who you want to make health care decisions for you when you can’t make them.
- The kind of medical treatment you want or don’t want.
- How comfortable you want to be.
- How you want people to treat you.
- What you want your loved ones to know.
20 Questions to Ask Your Terminally Ill Loved One
As a Bereavement Coordinator for hospice, I was privileged to sit at the bedside of many terminally ill patients and asked them the following questions. Look over the list and use the questions as a guide for the conversation you will have with your loved one.
- Do you feel as though you are being including in your health care decisions?
- What are you most afraid of?
- What are you most worried about?
- Do you worry about becoming a burden to anyone in particular?
- Is there anything that is making you feel uncomfortable?
- What is most difficult about leaving your loved ones behind?
- What do you think will happen to your loved ones after your death?
- Are there any relationships you want to mend?
- What tasks do you need to complete before you die?
- Would you prefer to die at home or in the hospital?
- What does a good death mean to you?
- What brings you the greatest sense of comfort?
- What are you most proud of?
- Do you have any regrets?
- What cultural beliefs sustain you?
- What is your role in the family?
- What role has faith played during your illness?
- Is there one thing that you want to pass along to those left behind?
- What does your illness mean to you?
- What is the meaning of your life?
My hope is that this article has helped you with some of the issues you are facing. Open to Hope has many other articles on coping with loss. Take the time to read what you can and know that you are not alone.
Barbara Rubel, MA, BCETS, CBS
I am so thrilled and I am moved that you have created this list of poignant questions for our loved ones that are dying. And, yet, the list is for all of us. Do each of us have an exit plan? Reading your list and reading it intently makes us think as a society of our lives as a whole and how we life this one beautiful life we have. I thank you for your generous and wise offering that will undoubtedly help us all through our lives and onto the next generation that will make thier decisions in life. Our decisions will affect theirs. Shine on Barbara.
Thank you for reading the 20 questions and sharing them with others. My hope is that the questions lead to actual conversations. For more information on speaking with a terminally ill loved one, please visit the Hopsice Foundation of America website. As part of their Lunch n Learn series, on December 7, 2011 between 1PM – 2PM, they will be exploring “Talking with Dying Patients and their Families.” For information on cost, CEUs and registration visit their website at http://www.hospicefoundation.org/lunchnlearn
Although I understand the limited space you had for writing this piece, I believe that you left out some very important information. On the provision of hospice care you are fundamentally correct but you left out the fact that two physicians must certify, in writing, your terminal 6 month or less prognosis. An important detail to the provision of hospice care. On the Advanced Care Planning and Five Wishes, you’ve left out any discussion of how to ensure that your wishes are honored or enforced. If your wishes are not carried out the planning is a worthless exercise. My greatest concern is the 20 questions portion. What is the point of asking such questions if you (as hospice counselor) are not or cannot do anything about the answers? For many of these questions, how often is even the patient in any position to do anything about the answers? I have seen, in my own experience, my dying, quadriplegic wife asked (by a hospice social worker) if she felt she was a burden to me. My wife said she felt that she was a burden. The social worker merely made note of her answer and did nothing else. It was no different than if the social worker had answered, Yes, you are. I see these questions as beyond insensitive if you plan to do nothing about the answers or know that you can’t. If all you are saying is that these questions are simply good conversation starters, I can think of many others, or other ways of wording these, that would not be insensitive to the dying patient.
Also, as HIPAA was in force when this was written, how many dying patients are not the first to know that they are dying? There is usually more concern as to whether or not to tell the rest of the family, friends, etc. And, question number 1 about feeling included in your health care decisions seems more protectionist for the hospice rather than of benefit to the patient (again, if nothing is going to be done about a negative response). Without any further comments, by you, about the course of these “conversations,” I see this “20 questions” as being more of a problem starter than comforting.
I also think these questions would be really insightful to ask of a dying person. http://www.nytimes.com/2015/01/11/fashion/no-37-big-wedding-or-small.html?_r=0