Frequently Asked Questions about Hospice and HVWA
1. Who are the people who do Hospice work?
2. Why do they do it?
3. What does the work consist of?
4. How do Hospice Volunteers supplement medical hospice?
5. How do seniors talk about their decisions to go into hospice care?
6. How do families feel about it? Are there sometimes disagreements within families about whether it’s
time for hospice care or not, especially if the senior is no longer capable of making decisions him or herself?
7. Is it import to have an advanced directive and a health care proxy?
8. Do Hospice Volunteers still work with loved ones after someone dies?
9. What are common emotions?
10. What do you recommend as the best ways to cope with a loss?
Read on for replies…
1. Who are the people who do Hospice work?
Our volunteers come from all walks of life and all ages – the youngest person we ever trained was an 18 year old student at the time, and the oldest was in her 80′s.
This diversity is very advantageous because, as you can imagine, our client base is also diverse. When we assign a volunteer we consider the client needs first and foremost but in addition to that we weigh in their career and family backgrounds, personal interests, community where they live,, armed services / veteran experience. We also weigh in on the volunteers comfort level and their availability, according to the client’s needs, before we finalize the assignment. It is so important for clients (and their families) to feel safe and comfortable with their Hospice volunteer because they are accepting this new relationship into their lives when they are vulnerable and actually preparing to “let go” of relationships and material things.
2. Why do they do it?
When we ask volunteers this question at the time of their pre-training interviews the responses we hear most often are:
a) Because I have been fortunate in my life and I want to give back.
b) I experienced the death of (mother, father, child, etc) and want to help others with what I have learned.c) We had Hospice services when our (family member) was dying and it is such a wonderful service I want to get involved.
d) More often of late we are training college students who are entering the counseling or healthcare field and want to receive training in death and dying. This is an area that is lacking in schooling for healthcare professionals and doctors (believe it or not).
3. What does the work consist of?
Our mission statement is:
Provide non-medical support to individuals and their families during the last phases of life, to loved ones throughout the grieving process, and to educate the community regarding issues related to death and grieving.
In Waterville, Maine our Hospice Volunteers provide free services that may include (according to clients’ needs):
a) End-of-life: We will serve a family for two years prior to a death (longer if survival is longer). End-of-life (what we call direct care) may include respite; emotional support for the client and / or family members; help with transportation, household chores, and errands. We also have a volunteer (Chuck Lakin) who will design and install handicap ramps (HVWA provides the materials) and the same volunteer will assist with building coffins and provides information on planning one’s own memorial service and “green burials” (see www.lastthings.net )
b) Bereavement Support: We provide bereavement services and peer support following a death whether the death was a result of illness, accident, suicide or homicide. If the grief process is complicated we may refer to and provide support in conjunction with a licensed counselor. Hospice Volunteers provide one-on-one support for up to a year following a death, facilitate grief groups (we offer groups for teens and children as well as for adults with losses such as children, parents and spouses. We also offer a special group for grieving men.) Volunteers also assist with bereavement correspondence (by mail and phone).
c) Community Outreach and Education: Some of our volunteers are members of our Speaker’s Bureau and assist with special trainings and speak on our behalf in the community (i.e. schools, civic organizations, churches).
d) Complementary Care Volunteers: We have about 15 volunteers who are massage therapists and / or practice Reiki, Polarity, and Reflexology. They will provide free sessions to our direct care clients, caregivers and bereavement clients. They will do this in homes or in the body worker room at our Hospice Community Center.e) Administrative Support: There are many volunteers within our organization who do not wish to work directly with clients but support us in ways that are equally as important. Some of the ways this group of volunteers help include office support; web master; snow removal; building and grounds projects; fundraising committees and / or volunteer at events; make client comfort blankets; donate or make supplies / items for programs.
4. How do Hospice Volunteers supplement medical hospice?
Medical Hospice provides the medical component of Hospice i.e. nurses, physician, social worker, pharmacist, chaplain and personal care attendants (or certified nursing assistants). In order for a home health agency to be certified as a Medicare Hospice provider they are federally mandated to have a volunteer component. In some cases the volunteer component is actually “built into” the home health agency. In HVWA’s case, and for about 200 other similar programs nationwide, we are an independent Hospice Volunteer agency and through contractual agreements with local Certified Hospice Medicare programs, we provide the volunteer support prior to a death and also follow-up bereavement support for their clients. We attend their IDT’s (interdisciplinary team meetings held every two weeks) and give our input and share insights and observations like the rest of the team.
The volunteer is the one constant in the home during the end-of-life process, because one volunteer is assigned and visits regularly (as needed) where the nurses and personal care attendants often vary from day to day. Hospice Volunteers are referred to as “the ears and eyes of Hospice” because they are in the client’s home most consistently and with no agenda (i.e. bath, medications, etc). They are sometimes viewed as less threatening by clients and can become almost like a family member or friend during this time. As strangers many clients find them easier to talk to – they tend to protect their family members and friends and do not always want to “burden” them or share their true feelings with them so the Hospice Volunteer becomes a very effective “sounding board”.
5. How do seniors talk about their decisions to go into hospice care?
This is as varied as people are. Some call us as soon as they receive a life-threatening diagnosis to determine what will be available for services “when they need them” and others fight it to the bitter end.
Our life journeys influence how we die (from life threatening illness). If one has an effective support network, strong communication skills, and can draw from their spirituality or faith their dying process tends to be more peaceful or what we call in Hospice, “beautiful deaths”. When there has been trauma or other complications such as estranged family, unresolved grief from deaths or major life transitions, a history of substance abuse, domestic violence or other difficult life events the dying process gets intertwined with feelings that are painful and difficult to sort through. Another influence is war veterans who have unresolved pain in their hearts from that life experience.
Hospice is a holistic approach to end-of-life care, however, and members of the IDT team such as social workers and chaplains are a tremendous help in these types of cases. Sometimes family meetings are held so some of the old demons can be addressed and sorted out. Family dynamics play a great deal into these discussions as well – i.e. person who is ill wants to protect their spouse or children so continue treatments even when there is no hope for cure. Physicians also play a VITAL role here. When physicians are open to the talking about Hospice their clients often are. The way Hospice care is presented to clients is so important! Hospice workers are not the “grim reapers” but actually add quality – and sometimes add time – to lives. When the stress of care and those decisions are “finally made” then the person who is ill and their family can get on with the business of living! Sometimes, with the advent of Hospice support and care, a client’s condition improves significantly and they are actually discharged from Hospice medical care.
6. How do families feel about it? Are there sometimes disagreements within families about whether it’s time for hospice care or not, especially if the senior is no longer capable of making decisions herself?
Families play a big part in these decisions – I mentioned this in #5 above also. When someone is dying or has died the worst can come out in the best of people. When a family is dysfunctional – for whatever reason – that becomes even more pronounced. The ideal, of course, is open communication with all interested parties present and all agree to the same plan. Unfortunately, that is not always the case.
7. Is it import to have an advanced directive and a health care
proxy?
This is not legal advice and what I have learned about advanced care directives in Maine!
An advanced care directive (sometimes referred to as a living will) is incredibly important. Without that and your appointed medical power of attorney (also referred to as durable power of attorney or personal representative) your wishes will not be known and more than likely will not be honored. Most people think their medical power of attorney has to be a relative – that is not the case. It is important to choose someone who you know will honor your wishes by talking to them first about what your wishes are and to be assured they understand and concur. Then provide them with a copy as well as your physician and local hospital. The medical power of attorney does not have decision making power after the death occurs unless they are also named as your estate representative in your last will and testament. These are separate people in many cases. Refer to your attorney and physician for professional guidance on these matters.
8. Do Hospice Volunteers still work with loved ones after someone dies?
Yes we do. Please see # 3b above. HVWA also offers Camp Ray of Hope, which is a statewide program for grieving families. About 100 campers from 14 counties attend this program which is staffed by volunteers from all over the state. HVWA is the founding and hosting agency. www.hvwa.org/camp-ray-of-hope
9. What are common emotions?
Anger, fear, guilt, sadness and loneliness. These feelings come in various intensities and combinations throughout the process, and as responses to different life experiences and memories. Elisabeth Kubler Ross identified these five stages of dying (I got these from Wikipedia rather than reinvent the wheel):
1. Denial: Example – “I feel fine.”; “This can’t be happening, not to me!”
2. Anger: Example – “Why me? It’s not fair!” “NO! NO! How can this happen!”
3. Bargaining: Example – “Just let me live to see my children graduate.”; “I’ll do anything, can’t you stretch it out? A few more years.”
4. Depression: Example – “I’m so sad, why bother with anything?”; “I’m going to die . . . What’s the point?”
5. Acceptance: Example – “It’s going to be OK.”; “I can’t fight it, I may as well prepare for it.”
Kubler-Ross also said that if “you believe people go through these stages 1-5 in order then you must also believe that people die in alphabetical order”. As I mentioned above these feelings and stages are as individual as the person is unique. I recommend a lovely little booklet that we share with our volunteers and clients called “Gone from my Sight” by Barbara Karnes – we find this book VERY helpful!
10. What do you recommend as the best ways to cope with a loss?
Cry, talk about your feelings, reach out to others who do not judge your process or expect you to “get back to normal”; read books and articles about grief; pray; journal; practice good self care i.e. exercise and eat healthy foods; take naps when you can – you probably will not sleep well at night for some time; join a support group; “do not should on yourself” but be gentle with yourself and accept that you can only do the best you can; learn to say no; spend time with people who accept that you are doing the best you can; try to understand that people mean well when they try to support you – even when they say what feels like the most insensitive comments like: She/ he is in a better place; It is God’s will; or only the good die young; give yourself permission to laugh again without feeling guilty about it. Know there is no magic number for when your grief is “over” but you are in the midst of a life changing process. The loss becomes part of who you are for the rest of your lifetime. The feelings get softer and bearable with time but you will never forget that person – nor would you want to. Over time the void created by their loss fills with new – often meaningful – interests and relationships. Eventually the memories bring a smile instead of pain. Ride the wave, roll with the thunder and eventually there will be a rainbow!
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