Deal with the Impending Death of a Terminally-ill Loved One
Edited by Kathy McGraw, Eng
My sister died of ovarian cancer seventeen years ago. I was with her until the very end, and the experience of watching her go through treatment and finally die from her disease was life-changing for me. Before her diagnosis, I had no experience with terminal illness, and likewise, I had never watched anyone die before.
While I would never wish such a circumstance on anyone, it, unfortunately, happens all too frequently. Having gone through it, I would like to share what I know about the process, and hopefully, make the road less bumpy for you if you should be facing losing a loved one to a terminal disease.
Diagnosis: Gathering Information about the Disease
Even in cases where the prognosis is poor, your loved one will have the option of aggressive treatment. For instance, when my sister received her diagnosis or stage IV ovarian cancer, her treating doctor viewed her condition as terminal. However, when my sister saw the oncologist, he gave her the option to undergo chemotherapy have a complete hysterectomy with tumor debulking.
- 1Ask the doctor what treatment options are available. If they are unable to give you this information because it isn't their specialty, then you'll have the chance to discuss this with the specialist when you see them.Advertisement
- 2Another good question to ask is whether or not there are any clinical trials that are accepting new patients. Sometimes terminal patients may be able to get on an experimental therapy protocol that could alter the course of the disease.Advertisement
- 3What are the side effects? Treatments have side effects, some more onerous than others. Only your loved one can determine what side effects they are willing to accept for the chance to get better, to prolong their life, or to reduce the symptoms of their condition. My sister chose to aggressively fight her cancer, even through multiple surgeries and chemo regimens.
- 4What are the expected outcomes with treatment vs. no treatment? Although it is difficult to hear, it's important that you and your loved one know the reality of their condition. Ask the doctor what outcomes can be expected if aggressive treatment is pursued versus palliative treatment. If your loved one doesn't want to discuss it at this time, perhaps you can take the doctor aside and ask him.
Navigating Health Care Coverage
Unfortunately, if you live in the United States, paying for your loved one's treatment is a concern. If your loved one is a child or your spouse, or you have power of attorney, you'll need to go over their health care coverage to find out what treatments are covered. Most first-line treatments should be covered, but there are deductibles, co-pays, and limits to consider.
When Nothing More Can Be Done
There will come a time when nothing more can be done to treat your loved one's illness. How soon it will come is an individual matter and depends on your loved one's specific illness and the state of their general health. For my sister, that time did not come until a year and a half after her diagnosis. She had been on yet another chemo regimen and ended up with a second bad kidney infection because the chemo had compromised her immune system. Her doctors told us that the therapy was doing more harm than good and it was time to consider other options. Things to consider at this stage are:
- 1Do not resuscitate (DNR) orders: A signed directive in which the patient states that they don't want any efforts made through CPR or machines to resuscitate them if they stop breathing.
Hospice care is a multidisciplinary approach to end-of-life care. It encompasses symptom relief, spiritual needs and emotional support for the dying person and their family. A hospice worker will help you and your loved one manage the pain and other symptoms, as well as help deal with the body after death. I can tell you that once we got my sister into hospice, it was a relief to us all. She even had an additional good month and a half, thanks to the pain regimen that her hospice caregiver put her on.
- To find a hospice in your area or to get more information, call The Hospice Foundation of America at 1- 800-854-3402
- For Canadians, call the Canadian Hospice Palliative Care Association at 1-800-668-2785
Funeral and Burial Arrangements
It's best to make funeral and burial arrangements while your loved one is still lucid enough to make these decisions on their own if they are an adult. Otherwise, it will fall to you. It's never a fun thing to think about at any time, but some considerations are:
- 1Burial or cremation: For some people, their religious faith dictates their options, but others may have a strong preference for one other the other, or it may not matter at all.
- 2Burial location: Where does your loved one want to be buried, or if they chose cremation, have their ashes scattered, if at all?
- 3Type of funeral: Does your loved one want to have a large funeral with extended family and friends in attendance or do they want a small private affair with just immediate family there?
- 4Type of casket or urn: There is an unbelievable variety of coffins and urns available.
The Final Days: Spending Time Together
When your loved one's life is measured in months, weeks, or days, you're going to want to spend as much time with them as possible. While they are still lucid, it's important to
- 1Resolve issues: If you have any outstanding resentments with your loved one, or if they have any with you, now is the time to get them out of the table and deal with them. Not only will this help your loved one to find peace, but it will also help you grieve with a clear conscience and heart.
- 2Laugh together: Tell jokes, keep things light. Enjoy your remaining time together. Laughter will help to ease both physical and emotional symptoms. Make the best of your loved one's remaining time.
At some point, your loved one will begin the final slide toward death; you'll know that the time is coming when your loved one:
- Is progressively weaker and more tired
- Spends more time sleeping than awake
- Loses interest in things they used to enjoy and other people
- Eats and drinks less
- Seems dazed and "not there."
- Develops a breathing pattern where there are long pauses between breaths
- Their hands and feet turn bluish
- Gets a rattle in their throat from mucus that they no longer have the strength to clear
It is important to give them permission to die if you haven't already. Some people linger longer than necessary because they don't want to cause the people they love more pain. Tell them it's okay to let go and hold their hand. If you can remain with them until the last, it can be a profound moment for you. Tell them that you love them; since it's thought that hearing is the last sense to go, the chances are good that they will hear you. Finally, tell them goodbye.
I still remember the day my sister died with crystal clarity. I remember holding her hand and being very aware of her breathing. I remember telling her that I loved her one last time, and then I remember the rain starting to fall after quietly took her last breath. I am glad I was there, even though it hurt so much to watch her die.
After death, you and your family may want to sit with the body for a while. There is no rush to do anything at this point, so take all the time you need. When you're ready, your hospice caregiver can arrange to have the body taken to the mortuary.
In the next few days following your loved one's death, there may be additional funeral arrangements to make, depending on how much your loved one was able to get done while they were still able, and you and your family will need to write the obituary.
The Aftermath: Grieving and Getting Support
Watching someone you love go through a terminal illness and finally succumb to it is one of the hardest things you will ever face. Well, I should say, it was the hardest thing I've ever had to face. No two people grieve the same way, and there is no "right" or "wrong" way to grieve.
Your emotions will be in tumult for a while, and you may start crying uncontrollably seeming from out of nowhere. It's okay: give yourself permission to break down and cry. Conversely, you may not cry at all, and this is okay, too.
Finally, don't be afraid to get help if you need it to help you cope with what has happened. Here is a resource to go to for finding a grief counselor in your area. Grief counselors can help you come to terms with your loss. While they can't get rid of your pain, they can help you to manage it in productive ways.