What I learned about hospice patients from a hospice nurse?

My sister is a hospice nurse who has worked with many hospice patients at Hospice Cincinnati. I am fortunate to share her experiences here on my site. Death is a part of everyone’s life. I hope that this post provides some insight into hospice patients and their loved ones. Having had both parents in hospice I think this is a topic we could all learn from, I know I did.

800px-Hold_my_handHospice nurses usually have suffered a loss themselves.

I appreciate my sisters time in helping this piece come to fruition. My sister is a hospice nurse who has endured personal loss. Her husband passed away in his 40’s, her daughter was just 4 at the time. I think the profession is fortunate to have someone who is as dedicated to her patients as much as she has been.

Hospice was set up to provide comfort care for those patients who are near the end of their life. Hospice nurses will encourage family members to openly discuss death with hospice patients which may be difficult for some. Hospice nurses can help guide the hospice patient and their families. They may suggest getting things in order financially or sharing passwords and accounts with a loved one which can be helpful if needed.

A hospice nurse shares her hospice patients feelings

Feelings of regret in a hospice patient?

Spend time with those you love

  • Not one patient ever said they wished they worked more. Most regretted not spending enough time with their families. Most of us work a lot of hours either out of necessity or because we want a better lifestyle. We cannot take the nicer homes and cars with us. Spend time with the ones with whom you love.

Staying in touch with friends

  • Staying in touch with friends seems to be a common theme. The only regret I remember my father saying was that he was sorry he did not keep in touch with his war buddies, my father was a World War II veteran.

Traveling

  • For those  hospice patients who did not have children, they usually wish they traveled more. Travel and experiencing new things in life is something most of us desire. Somehow we put it off. We say to ourselves “I’ll do it next year or when I retire”. I hope that you make the time to travel and do the things you want to do in life, life can be shorter than we want it to be.

Recommendations for family members of a hospice patient from a hospice nurse

Just be there

  • The hospice patient may feel very isolated and alone, they are going through a lot. The hospice patient may be cranky or appear withdrawn. Being there and providing support can do a world of  good.
  • Hospice nurses have heard hospice patients say that they wish people did not stay away. Some of us  feel uncomfortable when someone is dying. It may be that we  don’t know what to say or do and we do not want to say the wrong thing to someone who is dying. The family member or friend may find it easier to just stay away.

Take the precious time to say things that matter

  • When my father was diagnosed with an aggressive cancer my sister suggested we each go around the table and say something to him. In a way we validated our feelings to him. I am not saying it was easy, it was very emotional (need I mention that we all had a scotch in hand). I told him that although I was married to a good man he had always been my rock  and that when the time came I would miss him tremendously. Looking back, it was a good thing we did this. It gave us an opportunity to share our feelings.

Send a letter

  • Consider sending a card or writing a letter mentioning fond memories. Hospice patients usually want to laugh. If you do visit consider bringing out old photo albums or pictures. This may spark happy memories of family gatherings or vacations. Remind the patient of good times, things they have done and places they have seen.This may bring a sense of peace.

Hospice nurses suggest honesty

  • This is something you can speak about with the hospice team but you may want to consider avoiding saying things like “you are going to get better” to the hospice patient.  This may be difficult to do. I think it is human nature to fight and never give up. You may want to show your loved one  that there is hope but for the hospice patient who feels and believes they are dying they may feel differently. 
  • If you or the patient is religious, saying things such as “it is in God’s hands” may be better than saying “you will get better”. Hospice patients who are dying may feel like they are letting others down because they know they cannot live up to those expectations. They know they will not get better.

Hospice patient and discussions of death

  • Try not to avoid conversations about death. Hospice patients may want to openly discuss dying and what their wishes are. This may involve financial decisions or other thoughts that are concerning to them. If these conversations are avoided because the family member is in denial it may lead to feelings of frustration in the hospice patient.

Pushing the hospice patient to eat

  • Trying to push the hospice patient to eat more when they are not feeling well can lead to feelings of frustration. They would like to eat but there bodies are shutting down and they do not feel good. Think about the times you have been sick. Did you really want to eat?

Hospice patient and transition

  • Towards the end when the hospice patient starts to slip in and out of consciousness, a period known as transition, a quiet room may help. The patient may startle with loud noises, so try to keep things subdued. Quiet music may help. Try to avoid things that are stimulating. At this point you may see a change in the patient. They may start to withdraw and no longer have a desire to converse and have visitors.
  • Try to make things peaceful for the family member. They want to know that the people they love will be ok after they are gone. They want all the pieces in place. You may have to be stronger than you like and put on the happy front but know that it is for the patients best interest.
  • Hearing seems to be the last thing to go. At times it may appear  that the hospice patient is holding on for something.  Even though the patient may appear to be in a level of unconsciousness, they may still be able to comprehend.

Hospice patient and strained relationships

My sister told me stories where a loved one cannot come to visit or perhaps there is a strained relationship. Holding up a phone to the ear of the patient so that the family member can talk and make things right if need be has caused tears to flow in the dying patient who seems to be in a coma  She has seen this on several occasions. This is something to consider if the patient seems to be lingering.

The hospice patient dying at home

For us, it was nice that my parents were able to die at home. It seemed that we fulfilled their wishes. It also provided ample room for sleepovers toward the end rather than being in a hospital room. That being said, I have seen 15 plus people in hospital room (bless the staff for looking the other way). They too were able to share in good memories and support each other.  Either way, the sense of being together and sharing in this difficult time makes it easier.

My Friend Katheryn who is a social worker suggested having family and friends make recordings that can be uploaded to itunes and played for the patient when they wish (love this idea).

What suggestions do you have about hospice patients?

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