Hospice Care and Quality of Life

What is hospice care?  the word “hospice” comes from the Latin hospitium which the Romans used to describe as a place where guests were received with lodging and hospitality and they are believed to have existed since there were efforts to care for the sick and dying.  The pioneer of the modern hospice movement in this country was Dr. Florence Wald, who joined a group that formed Hospice, Inc. of New Haven, Connecticut, the first hospice in the U.S.  [From Hospice: Past, Future and Ethical Considerations, by Amy Corcoran and Jennifer Kapo in The Penn Center Guide to Bioethics at 775 (2009: Springer).

Why is it still so difficult for many people to talk about hospice care? I think the answer is simple – it has to do with our lingering taboo against open communication about death and the dying process.  I think this taboo is long overdue for being tossed out of our culture, and that is the reason for my writing about it.  Are you wondering about how hospice care is accepted in mainstream medicine in the U.S.? More information on the Medicare hospice benefit is available here  and did you know that over 90% of hospices in the US are certified by Medicare?

What is the difference between hospice and palliative care?  Both are focused on maintaining quality of life for the patient, and treating the person as an individual with dignity, and not focusing as a set of medical challenges to be overcome.   According to the National Hospice and Palliative Care Organization (NHPCO), hospice focuses on caring, not curing, and the care is usually provided in the person’s own home if possible, and in other instances may be provided in a hospital, nursing home, or freestanding hospice facility. The stated focus of hospice care is based on the belief that each of us has the right to die pain-free and with dignity, and to provide assistance to our loved ones to allow us to do so.  Hospice care often involves helping a person be comfortable by addressing pain management as well as physical and emotional suffering, and typically a team-based approach (doctors, nurses, social workers and chaplains) provide care for not just the individual but for their loved ones as well.  In addition to Medicare, hospice care is covered under most private insurance plans.

Palliative care is the medical term used for the kind of care provided for dying people in hospice care, but it also encompasses care at any stage of an illness or condition that addresses quality of life and managing physical and emotional pain and suffering associated with the illness. Unlike hospice care, palliative care can be appropriate for persons in any stage of a disease, it is care designed to relieve symptoms without having a curative effect on the underlying disease or condition.  Both hospice and palliative care focus on a person’s quality of life, but they are not the same type of care.

Searching for a cure at any cost and advocating heroic measures often take a steep toll in terms of quality of life.  It is a good idea to have a conversation about these matters in the context of making a durable power of attorney for health care or an advance directive.  If you are wondering about doctors in Colorado who provide palliative care, the Life Quality Institute  is a local organization that provides, among other things, educational presentations about end-of-life issues has a list of such providers available here.

Perhaps you are at a loss for what to say to a dying person, how to interact with them.  I liked the advice of Joan Halifax  who urges us to look beyond our own fears and into that person’s heart.  Her book, Being With Dying (published 2009is a beautiful work, and a pdf available here has some great ideas about how to use the gift of language to express ourselves, and the gift of presence to express compassion for a dying person.

I think my favorite book right now is The Four Things That Matter Most, by Ira Byock, M.D. (2004: Free Press).  Dr. Byock wrote the Foreward to Being With Dying, and he identifies the Four Things quite simply as:

Please forgive me.

I forgive you.

Thank you.

I love you.

Of course, the first thing he says after introducing these four things is not to wait until the end of someone’s life (often we have no idea when that will be) but rather that these things apply at any time during our lives.  They, like all the wisdom from many commentators on the end of life, have much relevance for the beginning and middle parts of our lives.  Can you imagine starting a conversation with a loved one with these words?  These words are powerful medicine!

Why Would I Want to Use an Elder/Probate Mediator for My Family’s Dispute?

How is your relationship with your siblings now that you must make plans for an aging or ailing parent who needs your help?  If you are facing this challenge – you are definitely not alone!  Lots of life events can shake up our worlds, many of them are anticipated and some unanticipated, but nothing has quite the same effect as having to deal with difficulties relating to an aging or ailing parent.  There is no preparation for this either – as life events go, this situation simply didn’t exist until recently because we didn’t have the longevity we have now which coupled with medical advancements and healthier lifestyles  make for an ever-expanding number.  Couple this with the number of baby boomers coming up on retirement age, and it’s quite impressive.  Your odds of being a caregiver at some point in your life are quite high, and so are the chances for conflict in that relationship.   Many of the difficulties among siblings stemming from dealing with an aging parent’s care   can be managed through effective communication (if that is possible and practiced), but taking care of an aging or ailing parent can be scary for many of us because it is a reminder of our own mortality  and often puts a history of sibling dysfunction into the forefront,  and this can be a toxic combination for siblings who may want to be pulling together for their parent when they find themselves unable to do so.

How do you and your siblings get along now, how have you fared in your adult relationships with each other, and is dealing with an aging or ailing parent putting a serious strain on the relationship?  This strain will obviously affect your ability to care for your parent, as well as how you take care of yourself and your own family

How do you find a mediator?  You can look on the internet of course for someone who has experience in not just mediation but also the substantive area of elder care – so they are familiar with the types of issues (financial, emotional, medical) as well as the legal context for the disputes (appropriate use of durable power of attorney, also guardianship and conservatorship issues).  The AARP recently published an article about how to choose an elder mediator   I liked how this article referred to mediators as “peacemakers,” as that is essentially the role of a mediator in this context, and it recognizes that adult child caregiving is usually fraught with conflict, as it often involves a difficult situation where siblings may be inattentive or disagree about a course of action to assist an aging, ill or frail parent.

In Colorado, mediators are not required to be licensed – so it’s an especially good idea to do some background checking about the mediator’s background and experience.  Holding oneself out as an “elder care mediator” is something most anyone could do, so you may want to confirm that a mediator has completed a 40 hour mediation training course (at minimum) and has some experience in elder care or probate disputes.    Here’s a simple roadmap for charting your course with siblings:

  1. What is fair?
  2. Who will decide?
  3. How will we work together?
  4. Don’t underestimate the transformational power of compassion; and
  5. Get help if you need it!

Happy trails!

National Healthcare Decision Day – Are You Ready?

Does It Matter How We Face a Health Crisis or the End of Our Life?  If you answered yes, like most Americans, then you may want to have that difficult conversation now – while you can, and put a plan in place to ensure that your preferences are known and that the pressure is taken off family members to decide in a vacuum.

Monday, April 16th marked the 5th Annual National Healthcare Decisions Day.  What is National Healthcare Decisions Day?      It is designed to educate the public and providers about the importance of advance care planning.  It promotes the idea that having these conversations and making plans to support having the preferences and choices carried out is taking care of each other.

Please don’t mistake this for a national “fill out a form” day.  This is not the message!  It is about appreciating the significance of talking to loved ones about health care scenarios and making preferences known.  The end result of this process is the documentation.

You can begin the process by asking yourself: “what kind of health care do I want if I have suffered a life-threatening traumatic injury, accident or face an illness that may be terminal or is likely to impair my ability to decide for myself?  These are not “unthinkable” scenarios, they happen every day whether we are aware of them or not.  While we cannot control many of the circumstances leading up to the illness or injury (when it is often too late to have the conversation), we can choose to make deliberate and informed choices about health care, and this will make it much easier for our loved ones to take care of us, instead of worrying about “what we would have wanted.”  A great form that is readily available to assist in thinking about these questions, scenarios, preferences and values is available from the University of New Mexico in pdf form.     This form is long but it is thorough and likely to cover situations that we otherwise wouldn’t consider.  Many of us use our personal experience as a reference point (“don’t let me end up like great-Grandma Jones who was kept alive for seven months . . . !”), but that should just be the starting point for the conversation.

How do I get started?

  1. Educate yourself – take a look at the Colorado Bar Association’s pamphlet about Advance Medical Directives.
  2. Think about what is important to you by using a tool like the Values History form or the American Bar Association’s Toolkit for Health Care Advance Planning
  3. If you have special concerns relating to your decisions, or need help getting family or loved ones involved in the process – get assistance!
  4. Pick a person (an agent or proxy) on whom you can rely to be your health care agent and make sure that any questions you have about how this arrangement works are addressed by legal and/or medical professionals.  Some basic questions about the difference between a financial and a health care power of attorney are answered in the Colorado Bar Association’s Senior Law Handbook   where you can also find good information about hospice and palliative care.
  5. When you have identified what you want, communicated with others and discussed your preferences, you will want to ensure that these will be carried out – so don’t forget the last step of making the documents!  Each state has its own unique laws, so while you may think that  a “one-size-fits-all” form you find is great, you may want to be sure that it will work in the way you want it to – so check with an attorney who focuses on elder law and these types of issues.

April is Donate Life Month – Are You a Registered Organ and Tissue Donor?

Have you seen the bumper sticker that says “recycle yourself?” perhaps not – it’s much more common to see the Donate Life license plates or the little red heart on your Colorado Driver’s License that indicates you are a registered organ and tissue donor.  April is Donate Life Month  – so please read on!  If you haven’t signed up yet because you still have questions about it, you can go here  to get the facts about organ donation.  Keep in mind that you should discuss with your family about the decision so they are clear about your wishes.  Why?  When you register by signing a donor card (on the Colorado driver’s license it’s indicated with a little heart with a “Y” in it just below your signature),  your family members will be clear about your wishes to donate.  If you’re a Colorado resident, click here to get information about how to register.   The Mayo Clinic has a good article here  busting some myths about organ donation, and the Donor Alliance recently released a local study conducted in Denver, Aurora and Pueblo.

A recent New York Times article is about a new policy in Israel that gives registered organ donors priority to receive transplants.   Israel’s change in policy was based was based on some unique facts of its religious population, but the cooperation of the religious communities resulted in a highly successful public awareness campaign, which swelled the numbers of registered donors.  Signing up for this is easy and you can save lives and enhance quality of life through a donation – signing up has never been easier, and this has increased the rolls of registered donors – but there’s still a long way to go.

There’s an interesting Pittsburgh Gazette article from February here and  Donate Life America, the national nonprofit that advocates for people to register as organ and tissue donors has been reaching its goals of adding donors in recent years, but it has set its goal for 2012 to register 20 million new donors.  Will you be one of them?  Talk about leaving a legacy! This is everyday heroism in action – turning tragic events into opportunities to save others’ lives.  Don’t forget to sign up!

Estate Planning for Blended or Nontraditional Families

A blended family or nontraditional family is a family in which one or both of the adults have children from a previous marriage or relationship.  In case you’re thinking “I didn’t have an estate plan for my first marriage –why would I need one for the second one?”  you may be overlooking the” details” of your children or grandchildren or unfamiliar with how best to take care of your second spouse or partner!  If you have children from a previous marriage, you may want to determine how your second spouse or partner and your kids will divide your estate.  Longevity (incapacity) planning looks at how the decision-making responsibilities will be shared among the family members or loved ones involved.  Both the estate and longevity planning will depend on your age and circumstances, as well as how old your kids are, and you may consider whether there are educational expenses or grandkids you want to provide for, and so on.  This is an especially important discussion to have with your second spouse or partner so that the concerns, goals and techniques are clear going forward.  A blended family situation is more likely to be driven by different estate planning goals for husband and wife or  life partners, than in a marriage or partnership the first time around – when a couple may be younger and share more common goals and there is typically only one set of children.

This estate planning, like all others, starts with a discussion.  So – what are some of the benefits of blended families estate planning?

  • helps identify goals of each spouse or partner – who they want to support and for what purposes;
  • can bring clarity for who provides what kind of support for  whom;
  • takes into account any pre-nuptial or post-nuptial agreements (these are known as “marital agreements” under Colorado law);
  • sheds light on financial and medical concerns and authority to make decisions in the event of incapacity or death.

If you are concerned about any of these issues and want to avoid a conflict-laden situation where  your surviving spouse or partner may be at odds with your kids or other family members, it is worth looking into making a plan.  A comprehensive estate plan will take into account your probate and nonprobate assets, the beneficiaries, and will also provide powers of attorney to provide for your welfare during short or long term disability or incapacity.  Read the CBA Estate Planning brochure

If you are looking to the future together and are realistic, making an estate plan can help cement expectations.  I liked this Ehow article on “How to Blend A Family,”  and no, it doesn’t involve a small kitchen appliance!

The term “blended families” doesn’t just apply to married couples – it can apply to unmarried couples as well, including a man and woman who could decide to marry each other if they chose to at a future date, or a same sex couple whose partnership may not be recognized as a marriage.  In Colorado, unmarried persons have the option of giving certain rights to another unmarried person through a Designated Beneficiaries Agreement. Find general information about Colorado Designated Beneficiaries Law here.

This agreement can provide benefits to the survivor of the two parties to a DBA, but does not provide disposition of property or confer rights for the second to die.  More information in my article here.

Okay, you may be interested in looking into this further, but maybe you don’t yet have a clear picture of what could happen if you (1) do nothing or (2) make assumptions without consulting the spouse or partner.  What are some things that could go wrong?

  • old wills and other plans are still in place that do not reflect current goals and concerns;
  • if you have minor children, outright gifts to them may be controlled by your former spouse;
  • picking a personal representative, guardian, trustee or co-trustee or other key people who do not get along with each other;
  • making your kids wait until the death of your surviving spouse or partner to inherit anything, which can fuel resentment;
  • failing to update beneficiary designations on nonprobate assets like retirement accounts, pay on death accounts, etc.  (these are not automatically changed as a result of divorce);
  • leaving everything to the surviving spouse or partner and assuming that he or she will “take care of” your kids; and
  • [this one is not unique to blended families]  leaving large amounts of money or property outright to someone who is not prepared to handle it – a/k/a the lottery effect.

If you are part of  a blended family and haven’t discussed with your spouse or partner what your wishes are, you may want to start that initial conversation – the first step to making plans.

Difficult Conversations About End of Life – DNR vs. Health Care Power of Attorney

What many people don’t want to consider – is the prospect of when a person’s DNR/DNI (do not resuscitate/do not intubate) directions may come into conflict with what an agent under a health care power of attorney decides. When a surrogate overrides the patient’s stated wishes (for example, where the children’s interests in “saying goodbye” override a mother’s DNR wishes) Check out this very powerful video of two daughters recounting the difficult decisions they made regarding their mother’s health care.

This video highlights the slippery slope of medical intervention and not knowing when the intervention will end and a daughter’s grief about going against her mother’s wishes.  She poignantly describes her mother’s searching eyes which seemed to ask “why are you doing this to me?”  This is an excellent reminder for all of us, especially those who work with older people who are facing health challenges: have the conversation with your kids or other surrogate decision makers and make your wishes explicit!  It is also useful to note the ongoing need for what the medical document known as a DNR means –it doesn’t mean “no medical care” – it means do not resuscitate.

Between the short periods of time a doctor may spend (if any time is spent at all) explaining to an older person or one who has a medical condition or disease which would make a DNR, and the reluctance that most people have to talk to their loved ones about these difficult situation, these conversations are hard, but worth the effort according to all the people I’ve spoken to about it.  I always encourage my clients, and sometimes also participate in family meetings around this issue of facilitating a specific conversation about identifying a older adult’s wishes, talking about particular scenarios and using specifics where appropriate to illustrate how wishes might be carried out.

Daughter who decided, when asked by the doctor whether she would give permission to put her mother on ventilator decided that she would have done things differently and would have declined intubation.  Daughters could see the pain their mother went through and finally asked mother to respond by blinking to their question “do you want to be taken off the ventilator?”  Very powerful video I strongly recommend.  This is why I think it is important to take time with clients, who are willing and interested in getting real about the difficult end-of-life choice, to discuss with them and often with their adult children the difficult but inevitable prospect of “letting go.”

Along similar lines is an article by Sally Mauk in The Missoulian entitled “Doctor Says Advances Prolong Life, Make Dying Harder,”   The article pinpoints several of the difficult facts that we baby boomers must face in light of the experience of many of our parents’ deaths as well as medical and economic realities that have dramatically changed in recent years.  Mauk’s article is primarily about Dr. Ira Byock, a past president of the American Academy of Hospice and Palliative Medicine.  Byock’s website is www.dyingwell.org and his book Dying Well, published by Riverhead in 1997, is on my office bookshelf, and his newest book “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life,”  is a book I’ll be reading soon.  It is best to take the time to start thinking about these issues so that a conversation with loved ones will be more likely and probably less stressful – start with your doctor and don’t forget to consider how the medical and legal documents can work together to support your goals.