What do you say?

I have been a home health nurse for many years. First of all, if the patient gets a terminal diagnosis, with no hope of cure and they are not expected to live 6 months or more then I offer Hospice care to the patient. Hospice is generally better at helping patients with end of life issues. However, there are some clients that either to not fit the "hospice category" or they refuse hospice because of beliefs/stigma etc.

Most of the time I find it better to just ask the patient how they feel about their news, what kind of support you can offer them, encourage as much family support as possible. Talk to the whole support group about what it might be like to die, getting affairs in order, talking to everyone that you have things to say to and making sure you are able to tell them the things that are important and the things that need to be said. It really depends on how long the patient is expected to live, and what their health state is. Some people feel pretty well and there are places they always wanted to travel and see, I encourage them and help make arrangements if there is DME or anything like that that they would need. Sometimes the patient is already so sick they can't get out of bed, or get around. I also try to encourage them to talk to their families about funeral arrangements, and get affairs in order, talk about DNR orders, living wills and HCPOAs. It is important that you facilitate their wishes to be carried out by talking about it.

I also have had some cancer patients that had the possibility of exsanguination. I encouraged the family to purchase some dark colored towels to keep handy just in case. It is important to address their pain issues and their fears. It really depends on the "state of active death" that they are in. If the patient is having periods of apnea and not breathing well already it may not be long before you get cheyne-stoke breathing, mottling of the skin, etc. I always try to educate the family about these kinds of things, what to expect and help with medications that may be effective to reduce symptoms.

Everyone is different, I encourage pastorial care, social work care, and respite care for caregivers. It depends on cultural beliefs, religious beliefs, patient support, patient personality, their past experiences with death and dying etc. I encourage the patient and family go ahead and make arrangements with the funeral home so that they can pick up the body, make sure that you know who can pronounce a body in your state and if the physician needs to be notified and/or will he sign a death certificate.

Don't be afraid of death, it is a natural part of life. If you appear apprehensive and your patient senses that then you can't be effective in helping them deal with it. This end of life stage is always a time I tell the patient and their family that you should do and say everything that needs to be done, their time on this Earth is limited now, and it is important to love as hard as you can love and embrace each day as a blessing. Spend time doing the things you always wanted to do. Say the things you have always wanted to say, whether it be by journaling, talking, videos etc. Having "notice" of dying is a blessing, this is the time that families and patients should come together and make the end of life the best possible. Some people die abruptly with MI, CVA, Accidents etc and there is no time to say goodbye and get things in order. These people have some time and they should utilize it to their advantage.

Above all else you want to make it a good experience for the patient and the family. You want to be honest about the facts, and encourage them to accept what is happening to them. There are stages of grief (Elizabeth Kubler Ross is an absolute expert in Death and Dying and has written many books) and the patient as well as the family members will have to make their own way through these stages. I sometimes tell the patient (depending on my relationship with them and their level of acceptance) that the have been dealt a tough hand of cards and depending on how they play them they can make it a winning proposition or a loosing proposition, and I tell them that I will be there to coach them to make it the most winning proposition possible under the circumstances. I can not perform miracles and prevent death, but I can help you make the death and dying process the best possible, by helping you define your wishes and letting the wishes be known so they can be carried out.

I encourage you to take some CEUs on death and dying, and read some of Elizabeth Kubler Ross information about death and dying, her book "On Death and Dying" was a mandatory book I had to read in nursing school. It has helped me learn more about how people deal with a bad set of circumstances. I have learned that different cultures, religious beliefs, educational levels, socio/ecconimical status, and past experiences affect the whole process and you as a health care provider have to be able to understand these issues, seek knowledge about these things and help the patient and family members cope with a bad situation.

Good Luck!