Living with life threatening illness and preparing for your death or the death of a loved one is always difficult, with many complex medical, legal, financial and emotional challenges and decisions to be made.
The following questions are ones that frequently arise when people are facing end of life issues. More specific information and resources related to the issues addressed below can be found in the consumer information section of the Resource Guide.
What do I need to think about or address in order to be as prepared as possible for death?
- Medical - Are you working with health care providers you trust, who listen to your questions and concerns, and provide you with enough information to make informed decisions either for yourself or on behalf of a loved one?
Advance Care Planning - Have you had detailed conversations with those you love about your values, preferences and wishes that will help guide decision-making around care that you do and do not want? Have you appointed a health care proxy?
Legal - Have you completed and signed a health care proxy form along with two witnesses? Have you completed - or updated - a will? Have you talked with a lawyer about other issues such as a durable power of attorney?
Financial - Are you familiar with the health benefits available to you through your private insurance plan, Medicare or Medicaid? Do you have a list of all insurance plans, including health, life and disability, that is accessible to family caregivers?
Emotional - Do you have adequate emotional support, as well as physical assistance or care giving, if needed? In addition to friends and family, support can be found through formal systems such as organized support groups or faith-based institutions.
How do I communicate effectively during doctor visits?
- Keep a list between appointments with things you want to report and questions you want to ask. Bring the list with you to appointments.
- Tell your doctor at the beginning of the appointment that you have a list of things to discuss in order to assure that there will be time to review your concerns and questions
- If you haven't gotten or don't understand an answer to your question ask it again, or ask for a simpler explanation.
- If you have many concerns ask to schedule a longer appointment
- When you are likely to address emotionally difficult issues or ones where significant medical decisions need to be made, bring someone with you to the appointment, or bring a tape recorder.
What specific questions are helpful to ask my (or my loved one's) doctor or nurse
- What is the range of time that a person with my diagnosis would be expected to live?
- What are my options, and what are the pros and cons of each of these?
- What are the typical problems that arise with this illness?
- What should we watch for?
- Are there symptoms we should be particularly concerned about?
- What support services would you expect us to need?
- Who should we talk to for comprehensive information on services available to help us with his or her care?
It is difficult to begin conversations with my loved one about his/her wishes and feelings about end of life care. What are sensitive ways to broach this conversation?
- "I want to make sure you always get the best care possible, or the type of care that you want, so there are things we should talk about…"?
- "I've been wondering if there are things that you want me to know about your beliefs or wishes that would help me be sure you get the care you want…"?
- "Since none of us knows what the future will bring, there are some things that I think we should all talk about…".
"If I'm ever in a position where I need to make some health care decisions for you, I'll be able to take care of you the best if I really know what you want…"
What are the red flags that I should notice that are a sign that it is time to get more help in caring for my loved one, or even to think about living situations where more care is provided?
- It seems like no matter what you do it isn't enough.
- The ability to keep your loved one safe around the clock is questionable.
- Family relationships are becoming problematic due to the stress of care giving.
- You are exhausted or developing frequent illnesses yourself.
- You feel generally overwhelmed.
- You do not have any time for yourself.
- Care giving responsibilities are running your life to an unacceptable degree..
- You are not taking care of yourself or are acting in self-destructive ways, such as drinking too much alcohol, over or under eating, not sleeping.
- You have no time in your life for enjoyment or relaxation
How do I help my children as we face a death in the family?
- Give children simple, honest explanations geared toward their age.
- Allow children to participate in caring for their ill loved one in age appropriate ways.
- Assure children that they are safe, and that they will be cared for.
Assure children that there is nothing they did to cause the illness, and there is nothing they can do to cure it. There is, however, much they can do to offer caring and comfort to the ill person they love.
Help children express their feelings in appropriate ways.
Seek help from others.
What do I do at the time of death if the plan we have developed with our doctor is for my loved one to die at home, but is not under the care of a hospice?
- By law, the medical examiner needs to be contacted prior to releasing your loved one to a funeral home. This can happen in two ways:
- If you have already chosen a funeral home, call your funeral director. He or she will take responsibility for calling the medical examiner. The medical examiner will contact your doctor, and then notify the funeral director that arrangements can proceed.
- If you haven’t already chosen a funeral home, you must call 911. Be sure to explain that the death was expected and had been planned to occur at home, in order to avoid an unnecessary ambulance bill. The police will contact the medical examiner in order to gain the approval for the release as described above. While that is taking place you can call a local funeral director. If you don’t know who to call, see the After Death Checklist.
- If your loved one’s death is expected and you have agreed upon DNR (do-not- resuscitate) orders, be sure to sign a Comfort Care form, as this is the only form that can be honored by emergency personnel.
If I am a veteran or the dependent of a veteran how do I learn about the benefits available to me?
- In Massachusetts there are over 500,000 veterans and over 900,000 dependents of veterans, and there are a variety of benefits for veterans, their spouses and dependents
- Through the Massachusetts Department of Veterans’ Services (see statewide resources in the Regional section) every city and town with a population over 12,500 has a Veterans Service Officer in the town hall. Towns with lower populations form regions, and your town hall should be able to connect you with your regional Veterans Service Officer. This officer will have information on benefits and resources that are available to you.
- In addition to the services available through the state, you may receive federal benefits through the Veterans’ Administration. To be connected to your regional office, call 1-800-827-1000.
If you are the widow of a veteran who was a 100% service connected disabled veteran there are additional benefits that you are entitled to. The Cold Star Wives of America, Inc., is a nonprofit military widow service organization that is available to assist you. Contact Virginia Moran Hurley, President Greater Boston Chapter, 617-479-8741.
What are some lessons learned that we hear about from survivors of life threatening illnesses?
- It is important to: Do your best to access quality care and services, including evidence-based and appropriate treatment and services, provided in a timely and competent way with good communication and shared decision-making with providers.
- It is important to: Have conversations with loved ones regarding values, preferences and wishes and appoint a healthcare proxy.
- It is important to: Get legal and financial matters in order and let family members/loved ones know where to find important papers
It is important to: Have meaning and purpose in each day, doing things that are important to you and spending time with people that you care about most. This may be as simple as having lunch with a friend, gardening, taking a walk, listening to music, doing something creative or watching a funny movie. Some people develop a spiritual practice or practice relaxation techniques through meditation, yoga, imagery or prayer.