• First and foremost, please look after your comfort.  Your medical team is obviously the best place to turn for that.  If you qualify for hospice, I strongly encourage you to explore that option.  A hospice team will be a truly powerful crutch to lean on and help you walk this path.  Hospice will be able to support your physical/medical comfort, your emotional comfort, and your spiritual comfort.  They can help with medical equipment (beds, chairs, support bars, etc), medication (pain & anxiety), grief support, skilled nursing, a chaplain, volunteers...and many also offer things like music therapy, energy therapy (ex: Reiki), visiting animals, and so much more.  There is a strong possibility that all of this will cost you nothing at all.  Hospice is not age-dependent either.  You can be young, young at heart, or an elder in the community, and they can help.  Hospice can meet you wherever you are: hospital, nursing facility, memory care, home, etc.

• After you work on stabilizing your comfort, you may have energy, time, and interest to look after some other points.  If you find yourself in this position, I would like to recommend you take a few moments to reflect on your priorities before diving into any particular direction.  Let's face it, this is your journey, and you need to understand what you've already accomplished, what you have to potentially accomplish, and in which order you feel these items should be tackled. 
  In addition to hospice, there are a few categories of people that I would like to recommend you seriously consider engaging in your end-of-life walk: 

  • your medical team;

  • an attorney that specializes in estate planning and end-of-life documents (wills, healthcare proxy, power of attorney, burial instructions, etc);

  • your loved ones;

  • your faith leader (if you have one).

I'll list out some possible tasks, in no particular order, and I encourage you to see if anything strikes you as "most important" or "does not apply".

• Advance directives - legal documents that provide instructions for medical care, and only go into effect if you are unable to communicate your wishes.  This is where you decide things like whether attempts should be made to resuscitate, ventilate/intubate, provide artificial nutrition, etc.  In Massachusetts, a single two-sided form (M.O.L.S.T.) can accomplish this, and takes five minutes to complete, once you know your wishes.  Ask your doctor for a copy or find information here.

• Add beneficiaries to any bank, investment, retirement, etc. accounts you have.  Even if you have a joint account (two equal names), it is good to list an extra beneficiary, in case something happens to both account owners at the same time (think car accident, weather-related incident,...).

• Healthcare proxy - This is a legal document in which you determine who can make medical decisions for you, should you become incapable of making them for yourself.  Outside of Massachusetts, this is sometimes called the Durable Power of Attorney for Health Care.  Use a document which is legally recognized in your state, and your attorney will guide you on this.

• Power of Attorney - This is a legal document that authorizes someone else to legally act on your behalf in legal and financial matters.  Though this can be an important document in the right circumstances, and with the right designated person(s), this can also be harmful.  Please, please, please consult an attorney to find out your options, and how this document works before completing it.  Again, it is VERY useful at end-of-life, but should be assigned with caution.

• Last Will and Testament - This is a legal document which designates what is to happen to your personal property upon your death, when the distribution is to be made, and who will serve as your executor/trustee.  As with any legal document, please consult an attorney.  Though it is possible to do this without an attorney, you do so at your own risk.  Here is some helpful information from the State of Massachusetts.  In lieu of having drafted your own will, your property will enter "probate" and the laws in your state will determine what happens with your property.

• Organ donation - Maybe you addressed this through your drivers license, or maybe you would like to look into this at this time.

• Memorial & burial selection - Some people opt to make their "funeral" arrangements and decisions while they are still alive.  This ensure that your wishes are honored as closely as possible, and your loved ones will be grateful to know this is already taken care of.

• Legacy project(s) - Sometimes we have descendants, friends, co-workers, or causes that we would like to leave a little something for.  This can be anything from writing a song or poem, assembling a scrapbook, writing down recipes, telling stories, making donations....The list is quite honestly endless.

• Please don't forget about your pets.  Who would you like to care for them, and have they been made aware of this?  Do they know your veterinarian, any special food or medical requirements, favorite toys or activities?

• "Living Will"/Special additional instructions - Massachusetts does not legally recognize a "living will", but rather uses the M.O.L.S.T. form we've already listed.  That being said, it might also be helpful for you to lay out specific extra instructions your healthcare proxy and medical care providers can use, to best make sure your wishes are honored.  Think of this as filling in the gaps left by the M.O.L.S.T. form.  For example, the form has an option under "Artificial Nutrition", which states "use artificial nutrition, but short term only."  Maybe you have a particular feeling about what "short term" means.  Do you have a preference as to where you die (hospital, nursing home, at home)?  Are there specific things that may be included (if possible) to make you more comfortable in your final stages (aromatherapy, sounds or music, lighting, people you would like present and their role, people you would not like to be present, etc).

You may think of some tasks that I didn't list here, and that is terrific.  Hopefully I've at least planted some seeds as to the types of things you might think about, and resources you might reference to help you along the way.  Again, this is your path and your journey.  You decide the order of priority for these, and you decide what you are capable of, and what simply won't get addressed.  Nothing is more important than your comfort right now, and anything that can be done to help you find more comfort physically, mentally, emotionally, and spiritually is in focus.  Let that be your guiding light, and may you find every comfort and peace for the rest of your days.

Holding space for someone as they walk the dying path can be a truly rewarding, challenging, selfless, and humbling experience. This is sacred work...even if you aren't religious.  This is introspective work...even if you aren't philosophical.  This is noble work...even if you are making it up as you go.  I'd like to start by reminding you of a few things, which you may already know:

• You must put your own oxygen mask on before helping others to put theirs on.  I'd like to thank my recent flight attendant for this one.  We are less helpful to others when we are struggling to make our own way.  NO, it is not selfish to ensure that you can stay awake, have enough nourishment to function, not be agitated and stressed when interacting with others, and experience emotions in a healthy way that does not overwhelm the person that is dying, other caretakes, or loved ones.  It is a mandatory part of being helpful to others that you take care of yourself.  You are not doing anyone any favors by adding to the list of worries.  Okay, I'll drop the lecture, but you get the point.

• You will not have all the answers, and that's okay.  It is not possible for most (if any) of us to be a doctor, nurse, lawyer, faith leader, funeral director, therapist, chef, housekeeper, artist, and motivational speaker.  Don't set that expectation for yourself, because you are setting yourself up for failure.  Whether you are a casual friend of the dying person and not sure what to say to them, or you are the primary caregiver and family "go to" for managing the dying person's situation, you will likely find moments when you feel uncomfortable, and that is exactly the same as everyone else.  I can say in full honesty that I have been at the bedside of the dying and experienced moments of sheer panic, not knowing what to do.  Even  those of us that do this more frequently need to work to find a level of comfort with feeling uncomfortable.  Take a moment, and then do your best.

• Your best is good enough.  I know, it's easy to say and sometimes hard to believe, but it is true.  There is no shame is saying, "I am sorry that xyz wasn't perfect, but please know that I am doing my best."  If you have time to ask someone or look online, maybe you can find ideas for a better way forward the next time you need it.  Use your resources.

• You are having an experience too, you are important, and you will need to live with this experience.  It is all-too-easy to put our every focus on the person that has reached the end-of-their life (or sometimes their closest loved ones), and wrap all of our thoughts and perspectives around them.  "How would they feel if I said...?"  "What would they think if I...?"  "How can I not sacrifice...?"  Please don't get me wrong here; I believe that we should be thoughtful, courteous, and generous all the time, and not just when someone around us is at the end of their life.  That being said, your life will go on, and it's okay for you to consider yourself in this moment.  If you have an inclination to quit your job to spend time in someone's dying journey, think that through first.  After they have died, now what will you do for rent/mortgage, food, bills, etc?  All I am suggesting is that you might want to reflect on how your decisions now will impact your life after this person has died.

Great, so those are some very important parameters to keep in mind as you walk with someone at the end of their life.  BUT...I'm guessing what you'd really like to read are answers to the immediate questions.  "What should I say to them?"  "How can I get them to consider....?"  "What do I do if....?"  "How should I act around them?"

Every situation is different.  Gosh, I hate writing those words even more than I hate hearing them.  It is the least satisfying collection of words I can imagine.

Walking with someone on their dying path covers a whole range of scenarios.  Maybe someone you know has just been given a terminal diagnosis, and they expect to have two years to live.  They are mobile, still want to work, still play in the softball league, and still want to go get a beer with you.  Maybe they got the diagnosis a couple of months ago, and they seem like a completely different person now that they believe they have a short time left.  Maybe we're talking about a close family member that was perfectly healthy, had an accident, and is now in a coma with only days left, at best.

You have been in this person's life and now are part of their death journey for a reason.  Be patient, helpful, supportive, and compassionate.  I choose the word "compassionate" here very deliberately.  It has a very specific meaning.  Having compassion is different than having empathy or sympathy. 

Sympathy is about commiserating.  It's about pity.  It's about putting yourself in an artificial emotion that allows you to "relate" to their experience.  Sympathy is usually an honest attempt at comforting someone by saying, "I know what you are going through."  Unfortunately, it usually only compounds the emotional difficulty because you are adding your distress to the moment.  They are at the end of their life, and you most likely won't be helping them to feel better by thinking about your "similar" experience.  It's like trying to make a broken stick stronger by putting a weight on top of it.

Empathy is about taking on someone else's emotions.  Empathy says, "I feel your pain/stress/anxiety."  Again, usually intended as an effort of support, it doesn't usually have the intended effect.  It's like trying to make a broken stick stronger by binding it to another broken stick.

Compassion is about making room for someone to have their experience, and to know that they are supported as they do so.  With compassion, we do not assume to know what they are experiencing, but we listen to how they are experiencing it. We do not attempt to have their experience, but rather we keep a safe space in which they can experience it for themselves.  It's like trying to make a broken stick stronger by tying it to a good, strong stick.

Take care of yourself, so that you are strong for others.  Be prepared to not have all the answers.  Do your best and appreciate that it is good enough.  And please, remember that you are having an experience too, and it is okay to consider yourself in that.  You have been in this person's life for a reason, and shying away from them or trying to artificially shift your role at the end of their life won't help you or them.  You can do this.

Well done!  I love your direction and encourage you to keep your momentum.  As I am keen to remind people, age is a poor indicator of life expectancy.  Averages are great, but sudden death from illness and/or accident happens, and we most certainly can start to plan for the unexpected.  That being said, some people that put themselves into this category do so after experiencing a recent loss.  This does not mean that you aren't right for wanting to think ahead, but please do so with caution.  Grief is a tricky thing, and if you are grieving, it is critical to make important decisions with caution.  As I started this page, "...figure out where you are..." At the very least, if you are at this point because of a recent or pending death of someone else, please make a promise to yourself to revisit your decisions at a specific date in the future, just to be sure you are still in agreement with your current self.

Though the tasks which you might look to accomplish in preparation for your end-of-life/dying/death are fairly consistent, the approach and priority can certainly change when you are in good health, good spirits, and hopefully have a long path ahead of you.  For a generic list of end-of-life planning options, please refer to the list from the "It's me" section above.  Please note, this list is in no particular order and you decide your own priorities, and select your own medical and legal team to help you.

Before we get to that, however, I'd like to spend a moment exploring how planning in advance (hopefully well-in-advance) can take a different approach.  You decide if this is for you or not.

When we are in good health and good humor, it can sometimes be easier to contemplate and discuss our eventual end-of-life.  This isn't about being inappropriate, insensitive, or flippant toward death.  This is about tackling a big subject from a position of strength, instead of when our death is near and we have many other things weighing on the moment.  It is often not only easier for us to think and speak about, but it is also easier for others to listen to and engage with.  Think about it - Would you find it more or less uncomfortable to speak about death with someone that is healthy and vibrant, or in a hospital and in the final stages of terminal illness?  Nothing in this realm is "one size fits all", and you know the people around you best.  If you think it appropriate, I would suggest that you consider breaking the ice with your loved ones, to start planting seeds about your wishes and priorities, learning about their wishes and priorities, and sharing in healthy discussion.  Maybe not at your birthday party.  Maybe not in your year-end recap letter to friends and family.  Or maybe these are perfect opportunities in your circle. Remember, we're planning ahead here, and hopefully can use time on our side to plant seeds and nurture them as we continue to enjoy life, at times appropriate for our personality and loved ones.

Here's an example: You're watching a movie with your significant other, and a scene comes on with a patient on life-support.  Maybe try and feel comfortable expressing something like, "That's what I would like - to be given every opportunity and technology to try to find a way back to life."  Or, maybe you lean the other way with, "If that was me in that bed, I don't think I would like all those machines keeping me alive.  I would like to die at home with my loved ones around."  It doesn't matter what your opinion is; it's yours and that makes it right for you.  What matters is that you find opportunities to drop little seeds, and maybe open conversations to explore options with those you love and trust.  When we have more time, we can use that to our advantage.

There is no need to rush.  Yes, we want to plan ahead so that we can hopefully create a sense of comfort, acceptance, and strength in the reality of death and dying, for us and our loved ones.  That does not mean we have to sprint through the process in a one-night cram session.  Be thoughtful.  Be resourceful.  Be informed.  Be flexible.

Wait..."Be flexible"?  Flexible?  Why?  

We can make every effort to plan ahead, do all the things we can think to do, ensure those that need to know our decisions have been updated, and then change our mind 20 years from now, or have something unexpectedly make our "best case" unachievable in it's ideal form.  That's okay.  If you've done 20 things to prepare and find one of them is not an option when the time comes, it's okay.  It's also important to let our loved ones know that we're laying out our "best case", and that it's okay if they simply aren't able to check all the boxes.  We don't want our legacy to be a path of guilt because our significant other just couldn't find any lavender spray to scent our room during vigil, so they got lemon balm.  Flexible.  Maybe we would love to be placed upon a funeral pyre, but that's not legal when and where we die, so the best our loved ones can do is to have us cremated and then spread those ashes over a campfire.  Flexible.  Maybe we decide we want to be cremated,  and then change our mind when we learn about green burials.  Flexible.

One more idea, since we're approaching this with some (hopefully) advanced thoughtfulness:   One really great, all-encompassing place to start getting ourselves organized, and thoughtfully building a better relationship with our ultimate end-of-life is a Death Journal.  You may make one or buy a starter template.  It doesn't matter.  The idea is to have a central place where we can reflect, record, and represent our journey exploring end-of-life, dying, and death.  You might look into this as well.

Alright, so we've looked at ways we can use time on our side, if we plan ahead.  As always, my wish is that I've simply got the wheels spinning, and you are now actively getting all kinds of ideas that are personal and meaningful to you.  Don't forget to check the partial list of things to maybe include in your planning, in the "It's me" section above.

I also encourage you to start doing.  Thinking, researching, and planning are all very good, but if you don't take action and begin checking things off the list, it's all for not.  Embrace your life.  Enjoy every moment you can.  Live your fullest life, death aware, so that you can be as prepared as possible, whenever the time comes.  You and your loved ones will be grateful for your courage and thoughtfulness.